This directory includes family support resources available in the seven state genetics region or nationally. For more information about the directory, click here

Help us keep this information current. Submit information about family support resources not included in the directory, or update information about resources by clicking "Edit Resource".

Click on a disorder below to view applicable family support resources.

Additional Resources	Homocystinuria
Biotinidase	Maple Syrup Urine Disease
Congenital Adrenal Hyperplasia	MCADD & Other Fatty Acid Oxidation Disorders
Congenital Hypothyroidism	Organic Acid Disorders
Cystic Fibrosis	Other Rare Disorders
Family Support	Phenylketonuria (PKU)
Financial Assistance	Programs and Services for Children and Youth with Special Health Care Needs
Galactosemia	Sickle Cell Disease & Other Hemoglobinpathies
General Disability Resources	Transitioning
General Genetic Conditions Resources	Tyrosinemia
Hearing	Urea Cycle Disorders

Additional Resources

Benefits For People With Disabilities
The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.

http://www.ssa.gov/disability/

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EXCEPTIONAL PARENT MAGAZINE
EP provides practical advice and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied health care professional, and educational professionals who are involved in their care and development.

http://www.eparent.com

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FAMILY SUPPORT NETWORK OF ILLINOIS
The mission of the Family Support Network is to unify individuals with disabilities and their families to advocate for funding services and community resources that strengthen and support the individual and the family directly by responding to their individual needs and empowering them to live in their own homes.

http://www.familysupportnetwork.org/

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FAMILY VOICES
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through their national network, Family Voices provides families with tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serves as a trusted resource on health care.

http://www.familyvoices.org/
http://www.familyvoices.org/states.php

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GENETIC ALLIANCE
Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.

http://www.geneticalliance.org/

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HEALTHY AND READY TO WORK (HRTW)
The mission of HRTW National Resource Center is to create changes in policy, programs, and practices that will help youth with special health care needs transition to adult health care with funding, to work, and to greater independence.

http://www.hrtw.org/

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Illinois Department of Public Health Newborn Screening - Fact Sheets
These informational fact sheets provide the latest information about health issues Illinoisans are asking about.

http://www.idph.state.il.us/HealthWellness/genetics.htm

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ILLINOIS LIFE SPAN
Statewide information resource and referral for advocacy and services for people with developmental disabilities.

http://www.illinoislifespan.org/index.asp

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INDIANA DIRECTORY OF DISABILITY RESOURCES
The purpose of the Indiana Directory of Disability Resources (IDDR) is to provide Hoosiers with a useful guide to disability services and to increase the public’s awareness of the available resources. While this is by no means an exhaustive list of disability-related organizations, it is intended to help users connect with some of the major service providers.

http://tinyurl.com/7hda92z

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Indiana Family Helpline
The Family Helpline was designed to assist in promoting Maternal and Child Health Services, WIC Services and support other programs and services throughout the state. The primary focus is to address questions relating to social service related concerns of callers throughout the state of Indiana. Callers’ needs are assessed by trained Communication Specialists, referred to the appropriate community resource(s) accessed through the county-specific computer resource database that presently contains over 10,000 resources. Phone: 1-855-HELP-1ST (1-855-435-7178)

http://www.in.gov/isdh/21047.htm

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INDIANA PROTECTION & ADVOCACY SERVICES (IPAS)
IPAS seeks to protect and promote the rights of individuals with disabilities, through empowerment and advocacy.

http://www.in.gov/ipas/index.htm

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Kentucky Special Parent Involvement Network, Inc.
The mission of KY-Spin, Inc. is to empower and support individuals with disabilities and their families to effectively advocate for and access needed information, resources, and support networks in order to enhance the quality of their lives.

http://www.kyspin.com/

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MADISONS FOUNDATION
Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication among parents, physicians, and medical experts.

http://madisonsfoundation.org/

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Michigan Alliance for Families
Michigan Alliance for Families provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services. This website can help you with finding information on educational issues as well as disability specific information.

http://www.michiganallianceforfamilies.org/

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MICHIGAN’S GENETIC RESOURCE CENTER
Provider information and resources for genetic services and conditions

http://www.MIGeneticsConnection.org/

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Minnesota PKU Foundation
The Minnesota PKU Foundation is a nonprofit charity established in 1984 to promote research and the welfare of individuals with PKU and their families. The programs and services offered through the Foundation are the result of a very active patient/family constituency and Board of Directors. The foundation is comprised of parents, grandparents, health care providers and other friends of the PKU Community. Through dedication and support of these individuals, the foundation is able to continue to raise money and support the community

http://www.mnpku.org/foundation

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MY BABY’S HEARING
This website provides information, answers questions and provides support for parents and families of children with hearing loss.

http://www.babyhearing.org/

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NATIONAL DISSEMINATION CENTER FOR CHILDREN WITH DISABILITIES
The National Dissemination Center provides information on disabilities in children and youth; programs and services for infants, children, and youth with disabilities; IDEA, the nation’s special education law; No Child Left Behind, the nation’s general education law; and research-based information on effective practices for children with disabilities.

http://www.nichcy.org/

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NATIONAL NEWBORN SCREENING & GENETICS RESOURCE CENTER
The National Newborn Screening & Genetics Resource Center provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.

http://genes-r-us.uthscsa.edu/

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NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
NORD is dedicated to improving the lives of all people affected by rare diseases through education, advocacy, research, and patient services.

http://www.rarediseases.org/

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OHIO COALITION FOR THE EDUCATION OF CHILDREN WITH DISABILITIES (OCECD)
OCECD serves families of infant, toddlers, children, and youth with disabilities in Ohio and the agencies who provide services to them. OCECD’s programs help parents become informed and effective representatives for their children in all educational settings. In addition, youth are assisted to advocate for themselves. Through knowledge about laws, resources, rights and responsibilities, families are better able to work with agencies to ensure that appropriate services are received for the benefit of their sons and daughters.

http://www.ocecd.org/index.php

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PKU ORGANIZATION OF ILLINOIS
The purpose of this website is to be a resource for families in Illinois and around the world dealing with Phenylketonuria and Allied Disorders.

http://www.pkuil.org/

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Save Babies Through Screening Foundation
The mission of the Save Babies Through Screening Foundation is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests. The Foundation is a leader in the national grassroots advocacy movement, media awareness and actively participates on local, state and federal levels to improve newborn screening. The Foundation’s goal is to see that every child born is screened successfully, effectively and comprehensively

http://savebabies.org

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State of Indiana Disability Resources
A listing of state government resources for individuals with disabilities.

http://www.in.gov/fssa/2328.htm

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THE ARC OF THE UNITED STATES
The Arc is the world’s largest community based organization of and for people with intellectual and developmental disabilities. It provides an array of services and supports for families and individuals.

http://www.thearc.org/
http://www.thearc.org/page.aspx?pid=2437

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THE FAMILY VILLAGE
The Family Village is a global community that integrates information, resources, and communication opportunities on the internet for persons with cognitive and other disabilities, for their families, and for those that provide them with services and support.

http://www.familyvillage.wisc.edu/

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The Maternal & Child Health Library at Georgetown
This knowledge path about caring for children and youth with special health care needs has been compiled by the MCH Library at Georgetown University. It offers a selection of current, high-quality resources that analyze data, describe effective programs, and report on policy and research aimed at developing systems of care that are family-centered, community-based, coordinated, and culturally competent. Separate sections present resources that address specific aspects of care and development, such as advocacy, financing services, rehabilitation, and transition. This knowledge path for health professionals, program administrators, policymakers, and researchers will be updated periodically. Separate briefs point to resources for families and schools.

http://www.mchlibrary.info/KnowledgePaths/kp_CSHCN

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Biotinidase Deficiency Family Support Group
This website is devoted to supporting those affected by biotinidase deficiency. This support group is a non-profit volunteer organization. Our mission is to establish a forum to exchange information about biotinidase deficiency among affected individuals and with medical professionals and to advocate for the inclusion of biotinidase testing in all newborn screening programs. This site was developed in January 2001 and is continually revised and updated. The idea of this website was developed by a group of parents with affected children who found no specific support group for this disorder. With the encouragement of Dr. Barry Wolf, Human Geneticist who discovered biotinidase deficiency, the Farmer and Smith families developed this site with the input of many others.

http://biotinidasedeficiency.20m.com/

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Genetic Alliance
Genetic Alliance has become the world's leading nonprofit health advocacy organization committed to transforming health through genetics. Genetic Alliance actively engages in improving access to information for individuals, families, and communities, while supporting the translation of research into services.

http://www.geneticalliance.org

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The MAGIC Foundation
The MAGIC Foundation is a national non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth.

http://www.magicfoundation.org/

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ACCORD ALLIANCE
Accord Alliance seeks to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by disorders of sex development.

http://accordalliance.org/index.php

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CARES Foundation
CARES Foundation is a nonprofit organization committed to improving the lives of families and individuals affected by Congenital Adrenal Hyperplasia (CAH) through proactively advancing research for a better understanding of CAH, better treatments and a cure; educating the public and healthcare professionals about all forms of CAH; advocating for universal newborn screening; immediate, appropriate emergency medical treatment; and comprehensive lifelong care; as well as providing support services and resources vital to the CAH community worldwide.

http://www.caresfoundation.org

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Congenital Adrenal Hyperplasia Education and Support Network
Congenital Adrenal Hyperplasia Education and Support Network provides information and support resources. Through the people and support page you will find other people dealing with your condition.

http://www.congenitaladrenalhyperplasia.org/

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CONGENITAL ADRENAL HYPERPLASIA FOR TEENS YAHOO GROUP
Want to talk with other teens with CAH? Join the CARES Teen Chat Group (Teens only - this is an adult monitored group).

http://health.groups.yahoo.com/group/caresteenchat

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NATIONAL ADRENAL DISEASES FOUNDATION (NADF)
NADF is dedicated to providing support, information, and education to individuals having Addison’s disease as well as other disease of the adrenal glands.

http://www.nadf.us/

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THE MAGIC FOUNDATION
The MAGIC Foundation is a national non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth.

http://www.magicfoundation.org/www

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AMERICAN THYROID ASSOCIATION
The American Thyroid Association is the leading organization focused on thyroid biology and the prevention and treatment of thyroid disorders through excellence and innovation in research, clinical care, education, and public health.

http://www.thyroid.org/index.html

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THE HORMONE FOUNDATION
The Hormone Foundation is a leading educational resource for you, your loved ones, and your health professionals on the prevention, treatment, and cure of hormone-related conditions.

http://www.hormone.org/

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CHILDREN’S LIVER ASSOCIATION FOR SUPPORT SERVICES (C.L.A.S.S.)
C.L.A.S.S. was formed because of the recognized need for an organization dedicated to addressing the emotional, educational, and financial needs of families with children affected by liver disease and transplantation.

http://classkids.org/

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CYSTIC FIBROSIS FOUNDATION
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

http://www.cff.org/
http://www.cff.org/aboutCFFoundation/Locations/Fin

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CYSTICFIBROSIS.COM
CysticFibrosis.com is the world’s leading online social network for cystic fibrosis patients, caregivers, and families.

http://cysticfibrosis.com/

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INTERNATIONAL CYSTIC FIBROSIS SUPPORT GROUP
The purpose of the International Cystic Fibrosis Support group is to disseminate information concerning cystic fibrosis, to give support to those involved with the disease, and to provide a forum for the discussion of topics related to cystic fibrosis.

http://cf.conncoll.edu/

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MICHIGAN PULMONARY DISEASE COMMUNITY, INC. (MPDCI)
MPDCI is dedicated to providing direct and indirect services to enhance the lives of people with cystic fibrosis, their families, and the communities that support them.

http://www.mpdci.org/

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Ability Online
Ability Online is an extraordinary and absolutely free Internet community. Young people with disabilities and illnesses connect with all kinds of possibilities that address their needs for friendship, support and information. They meet and chat with other people like them in a virtual world that transcends boundaries and barriers. They make friends, get tips from mentors, and freely participate in an atmosphere of collaboration, companionship and support. This remarkable community also provides many benefits to parents, family members and others who want to make a difference in enabling and enriching the lives of those they know and love.

http://www.abilityonline.org/

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ABOUT SPECIAL KIDS - INDIANA
A parent to parent organization that provides support, information, and resources from parents and families members of children with special needs.

http://www.aboutspecialkids.org/

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AMERICAN SOCIETY FOR DEAF CHILDREN
The American Society for Deaf Children supports and educates families of deaf and hard of hearing children and advocates for high quality programs and services.

http://www.deafchildren.org/

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Aubrey Rose Foundation
Our mission is to help families caring for children with life threatening illnesses with our focus being on the family unity. We strive to lift families from life's complexities during this difficult time by providing emotional and financial support.

http://www.aubreyrose.org/

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BIRTH DEFECT RESEARCH FOR CHILDREN, INC. (BDRC)
Birth Defect Research for Children, Inc. (BDRC) provides parents and expectant parents with information about birth defects and support services for their children.

http://www.birthdefects.org

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Building Blocks for Kids
The Building Blocks for Kids’ mission is to improve the quality of life for children with health-related needs that are not being met due to a lack of insurance, government funding, and/or family resources. We assist our families by finding alternative resources for them and/or by providing financial assistance for the need. However, even when funds are scarce, the fact that we continually try to find resources for our families gives them hope that there is still someone out there trying to help them after so many doors have been closed in their face.

http://www.bb4k.org/

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CLIMB – CHILDREN LIVING WITH INHERITED METABOLIC DISEASES
CLIMB is committed to fighting metabolic diseases through research, awareness, and support.

http://www.climb.org.uk/

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Complex Child Magazine
Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.

http://www.complexchild.com/

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FAMILY SUPPORT NETWORK OF MICHIGAN
Provides emotional support and information to families of children with special health care needs.

http://tinyurl.com/76rvwzj

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GALACTOSEMIC FAMILIES OF MINNESOTA
This group was founded for the purpose of sharing information about galactosemia and to get families from Minnesota and surrounding states in touch with each other for support and education.

http://www.galactosemia-mn.com/

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Medical Home Portal
The Medical Home Portal aims to provide ready access to reliable and useful information for professionals and families to help them care and advocate for children and youth with special health care needs (CYSHCN), as partners in the Medical Home model. Click on the section entitled "Parents and Families" for detailed information and resources on the following topics: Learning about Diagnosis, Caring for Children with Chronic Conditions, Education & School, and Transition Issues.

http://www.medicalhomeportal.org/

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MICHIGAN FAMILY-TO-FAMILY HEALTH INFORMATION & EDUCATION CENTER
The Family-to-Family Health Information & Education Center’s goal is to improve access to quality care and supports for children with special needs in their community by empowering families. The website is designed as a virtual center you can visit for information, education and/or parent-to-parent support.

http://www.bridges4kids.org/f2f/

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MICHIGAN PKU
The goal of the Michigan PKU website is to provide information and support for families and individuals with PKU in Michigan.

http://www.michigan-pku.org/

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MUMS: NATIONAL PARENT TO PARENT NETWORK
Provides support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.

http://www.netnet.net/mums/

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MY BABY’S HEARING
This website provides information, answers questions and provides support for parents and families of children with hearing loss.

http://www.babyhearing.org/

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PACER CENTER - MINNESOTA
The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

http://www.pacer.org/

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PARENT TO PARENT - USA
Connects parents, family members, and professionals to statewide parent to parent programs.

http://www.p2pusa.org/

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PARENT TO PARENT OF WISCONSIN
Provides parent support to parents of children with special needs through a one-to-one connection with another parent who has similar experience.

http://www.p2pwi.org/

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SIBLING SUPPORT PROJECT
Search for local Sibshops programs that provide opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context.

http://www.siblingsupport.org/
http://www.siblingsupport.org/sibshops/find-a-sibs

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STARLIGHT CHILDREN’S FOUNDATION
Starlight Children’s Foundation helps seriously ill children and their families cope with their pain, fear, and isolation through entertainment, education, and family activities.

http://www.starlight.org/
http://www.starlight.org/locations/

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THE ARC OF ILLINOIS FAMILY TO FAMILY HEALTH INFORMATION AND EDUCATION CENTER
The Family to Family Health Information and Education Center offers information and referral services, health-related training opportunities for families, youth, and professional helpers, specialized training for parent leaders and organizations, and linkages to local, regional, statewide, and national partners.

http://www.thearcofil.org/

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THE ARC OF KENTUCKY FAMILY TO FAMILY HEALTH INFORMATION AND EDUCATION INITIATIVE
Kentucky Family to Family Health Information and Education Initiative is a network for families that have children with special health care needs. The initiative offers opportunities for families to connect with one another to share experiences, information, and/or support.

http://www.arcofky.org/

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THE FATHERS NETWORK
Provides resources and support to all men who have children with special needs.

http://www.fathersnetwork.org/

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The FOD Family Support Group
The FOD Family Support Group's online 'Communication Network' is intended to be used as a worldwide resource for families, friends, clinicians, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and concerns for those whose lives have been touched by a Fatty Oxidation Disorder. Family stories are shared, questions are answered, nutrition information is discussed, and medical and pharmaceutical updates are offered.

http://www.fodsupport.org/

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THE MORGAN PROJECT
The MORGAN Project works to promote awareness and support of parents caring for their special-needs children, and to enhance the quality of life for these special families.

http://themorganproject.org/

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UIC DIVISION OF SPECIALIZED CARE FOR CHILDREN (DSCC
DSCC’s mission focuses on public service, education, and research as a basis to provide, promote, and coordinate family-centered, community-based, culturally competent care for eligible children with special health care needs in Illinois.

http://www.uic.edu/hsc/dscc

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CATALYST CENTER – IMPROVING FINANCING OF CARE FOR CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS
The Catalyst Center is a national center dedicated to improving health care insurance and financing for children and youth with special health care needs.

http://www.hdwg.org/catalyst/

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INSURE KIDS NOW!
Puts families in direct contact with their own state’s children’s health insurance program.

http://www.insurekidsnow.gov/

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NEEDY MEDS
Provides information about programs that assist people who cannot afford medicine or healthcare costs.

http://www.needymeds.org/

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PAYING THE BILLS
Provides information and strategies for families on financing health care for children with special needs.

http://www.neserve.org/neserve/ptb.html

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Rx ASSIST – PATIENT ASSISTANCE PROGRAM CENTER
Provides a comprehensive directory of free and low cost medicine programs and other ways to manage medication costs.

http://www.rxassist.org/

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Rx OUTREACH
Offers prescription medicines to uninsured individuals and families, as well as those who have limited prescription drug coverage.

http://www.rxoutreach.com/

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STATE OF ILLINOIS – ALL KIDS
Provides information about Illinois’ program to provide healthcare for all kids.

http://www.allkids.com/

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STATE OF INDIANA – CHILDREN’S HEALTH INSURANCE PROGRAM
Provides information about CHIP and Hoosier Healthwise, Indiana’s health insurance program.

http://www.in.gov/fssa/ompp/2545.htm

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State of Indiana Disability Resources
A listing of state government resources for individuals with disabilities.

http://www.in.gov/fssa/2328.htm

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STATE OF KENTUCKY – KIDS’ HEALTH
Provides information about the Kentucky Children’s Health Insurance Program.

http://kidshealth.ky.gov/en/

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STATE OF MICHIGAN – MICHILD
Provides information about MIChild, a health insurance program for uninsured children.

http://tinyurl.com/3t6jdoc

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STATE OF MINNESOTA – MINNESOTA HEALTH CARE PROGRAMS
Provides information about Minnesota’s health care programs.

http://tinyurl.com/76dvakh
http://dhs.state.mn.us

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STATE OF OHIO – HEALTHY START
Provides information about Healthy Start, Ohio’s children’s health insurance program.

http://jfs.ohio.gov/OHP/consumers/familychild.stm

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STATE OF WISCONSIN – BADGERCARE PLUS
Provides information about BadgerCare Plus, Wisconsin’s program for uninsured children.

http://www.badgercareplus.org/

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Variety The Children's Charity
Variety Kids on the Go! aims to help kids gain mobility, confidence, freedom, independence and the chance to join in the life of their community by providing funding for walkers, wheelchairs, specially-designed adaptive bikes, strollers, prosthetic limbs and other devices to families with the most need. The program also puts more Sunshine Coaches, specially-equipped passenger vans, on the road to provide mobility-disadvantaged children with much-needed transportation to medical care, school, and outreach activities.

http://www.usvariety.org/index.html

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PARENTS OF GALACTOSEMIC CHILDREN, INC. (PGC)
Parents of Galactosemic Children, Inc. (PGC) provides information, support, and networking opportunities to families affected by galactosemia.

http://www.galactosemia.org/

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ILLINOIS LIFE SPAN
Statewide information resource and referral for advocacy and services for people with developmental disabilities.

http://www.illinoislifespan.org/index.asp

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IN*SOURCE – INDIANA
IN*Source provides parents, families, and service providers in Indiana with the information and training necessary to help assure effective educational programs and appropriate services for children and young adults with disabilities.

http://www.insource.org/

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MARCH OF DIMES BIRTH DEFECTS FOUNDATION
March of Dimes’ mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.

http://www.marchofdimes.com
http://www.marchofdimes.com/chapter_view_all.asp

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MICHIGAN’S GENETIC RESOURCE CENTER
Provider information and resources for genetic services and conditions

http://www.MIGeneticsConnection.org/

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ALEXANDER GRAHAM BELL ASSOCIATION FOR THE DEAF AND HARD OF HEARING
Through advocacy, education, research, and financial aid, AG Bell helps to ensure that every child and adult with hearing loss has the opportunity to listen, talk and thrive in mainstream society.

http://nc.agbell.org/page.aspx?pid=348

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MY BABY’S HEARING
This website provides information, answers questions and provides support for parents and families of children with hearing loss.

http://www.babyhearing.org/

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MAPLE SYRUP URINE DISEASE (MSUD) FAMILY SUPPORT GROUP
The MSUD Family Support Group is dedicated to providing opportunities for support and personal contact for those with MSUD and their families, distributing information and raising public awareness, strengthening the liaison between families and professionals, and supporting newborn screening programs and research for MSUD.

http://www.msud-support.org/

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MSUD RESEARCH FOUNDATION
The MSUD Research Foundation is committed to promote the need for ongoing research of MSUD in an effort to ensure all families are afforded the technology, services, education, and treatment available to enable early detection and successful management of MSUD.

http://www.msud-support.org/

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MSUD YAHOO GROUP
This group provides support to parents of children with MSUD as well as to adults with MSUD

http://health.groups.yahoo.com/group/msud/

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FOD FAMILY SUPPORT GROUP
The FOD Family Support Group’s online ‘Communication Network’ is intended to be used as a worldwide resource for families, friends, clinicians, researchers, and others who would like to support, educate, and provide a forum for those whose lives have been touched by Fatty Acid Oxidation Disorder.

http://www.fodsupport.org/

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UNITED MITOCHONDRIAL DISEASE FOUNDATION (UMDF)
The mission of UMDF is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.

http://www.umdf.org/
http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042125/

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VLCAD SUPPORT – YAHOO GROUPS
Support for families dealing with VLCAD, a fatty acid oxidation disorder.

http://health.groups.yahoo.com/group/VLCADsupport/

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INTERNATIONAL ORGANIZATION FOR GLUTARIC ACIDEMIA (IOGA)
IOGA engages in patient advocacy and support, offers family networking services, promotes research, offers medical referrals and engages in patient education for those affected by Glutaric Acidemia Type 1 and other neurological and metabolic diseases.

http://www.glutaricacidemia.org

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Organic Acidemia Association
The Organic Acidemia Association is a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. We support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.

http://www.oaanews.org/

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ORGANIC ACIDEMIA ASSOCIATION
The Organic Acidemia Association’s mission is to empower families and health care professionals with knowledge in organic academia metabolic disorders

http://www.oaanews.org/

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PROPIONIC ACIDEMIA FOUNDATION
The Propionic Acidemia Foundation is an organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

http://www.pafoundation.com/

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UNITED MITOCHONDRIAL DISEASE FOUNDATION (UMDF
The mission of UMDF is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.

http://www.umdf.org/
http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042125/

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AMERICAN ASSOCIATION FOR KLINEFELTER SYNDROME INFORMATION AND SUPPORT (AAKSIS)
AAKSIS is dedicated to bringing you accurate and current information about Klinefelter Syndrome and is a network for individuals, families, and anyone interested in learning more about Klinefelter Syndrome.

http://www.aaksis.org

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CLEFT PALATE FOUNDATION
The mission of the Cleft Palate Foundation is to provide the essential information and research that enhances the quality of life for individuals affected by cleft lip and palate and other facial birth defects.

http://www.cleftline.org/

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KS&A
KS&A’s mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.

http://www.genetic.org
http://www.genetic.org/knowledge/support/action/C1

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MUSCULAR DYSTROPHY ASSOCIATION
MDA combats neuromuscular disease through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education.

http://www.mdausa.org/
http://www.mdausa.org/locate/

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MUSCULAR DYSTROPHY FAMILY FOUNDATION
The Muscular Dystrophy Family Foundation’s mission is to provide adaptive equipment and emotional support to individuals and families with muscular dystrophy.

http://www.mdff.org/

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NATIONAL DOWN SYNDROME SOCIETY
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance, and inclusion of people with Down syndrome.

http://www.ndss.org/
http://www.ndss.org/index.php?option=com_content&v

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NATIONAL FRAGILE X FOUNDATION
The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X.

http://www.fragilex.org
http://www.fragilex.org/html/parent_resources.htm

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NATIONAL NIEMANN-PICK DISEASE FOUNDATION
The National Niemann-Pick Disease Foundation supports and promotes research to find treatments for a cure for all types of Niemann-Pick Disease, and also provides support services for all individuals and families affected by NPD.

http://www.nnpdf.org/

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SUPPORT ORGANIZATION FOR TRISOMY 18, 13 AND RELATED DISORDERS (SOFT)
SOFT is an organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13) and education to families and professionals interested in the care of these children.

http://www.trisomy.org

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THE INTERNATIONAL 22Q11.2 DELETION SYNDROME FOUNDATION, INC.
22q was founded by parents in an effort to bring awareness and support for this rare and under recognized condition.

http://www.22q.org/

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TURNER SYNDROME SOCIETY
The Turner Syndrome Society of the U.S. creates awareness, promotes research, and provides support for all persons touched by Turner Syndrome.

http://www.turnersyndrome.org/

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INDIANA PKU & ALLIED DISORDERS ASSOCIATION
The Indiana PKU & Allied Disorders Association was formed in order to be a resource to families who live with PKU or other allied disorders.

http://www.indianapku.org/

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MICHIGAN PKU
The goal of the Michigan PKU website is to provide information and support for families and individuals with PKU in Michigan.

http://www.michigan-pku.org/

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MID-ATLANTIC CONNECTION FOR PKU AND ALLIED DISORDERS, INC.
The Mid-Atlantic Connection for PKU and Allied Disorders is dedicated to improving the health and well being of individuals and families affected by Phenylkenoturia and related metabolic disorders.

http://www.macpad.org/
http://www.macpad.org/page.aspx?id=92188

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NATIONAL PKU NEWS
National PKU News is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.

http://www.pkunews.org/

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PKU AND ALLIED DISORDERS OF WISCONSIN (PADOW)
PADOW is an organization that helps educate, advocate, and support patients with PKU and their families in Wisconsin.

http://www.padow.org/

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STATE OF ILLINOIS – CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Provides a program for children with special health care needs, which includes diagnostic and treatment services for children who are impaired as a result of a congenital and/or acquired condition or have a condition which may lead to chronic impairment.

http://www.dhs.state.il.us/page.aspx?item=41542

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STATE OF INDIANA – CHILDREN’S SPECIAL HEALTH CARE SERVICES
Provides supplemental medical coverage to help families of children who have serious, chronic medical conditions.

http://www.in.gov/isdh/19613.htm

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STATE OF KENTUCKY – COMMISSION FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Provides programs that enhance the quality of life for children with special health care needs through direct service, leadership, education, and collaboration.

http://chfs.ky.gov/ccshcn/

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STATE OF MICHIGAN – CHILDREN’S SPECIAL HEALTH CARE SERVICES
Assists individuals with special health care needs in accessing the broadest possible range of appropriate medical care, health education, and supports.

http://www.michigan.gov/mdch/0,1607,7-132-2942_491

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STATE OF MICHIGAN – MICHILD
Provides information about MIChild, a health insurance program for uninsured children.

http://tinyurl.com/3t6jdoc

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STATE OF MINNESOTA – CHILDREN WITH SPECIAL HEALTH NEEDS
Provides statewide leadership through partnerships with key stakeholders for the purpose of improving the access and quality of health care and other service systems that are designed to meet the needs of children and youth with special health care needs and their families.

www.health.state.mn.us/mcshn

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STATE OF MINNESOTA – MINNESOTA HEALTH CARE PROGRAMS
Provides information about Minnesota’s health care programs.

http://tinyurl.com/76dvakh
http://dhs.state.mn.us

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STATE OF OHIO – BUREAU FOR CHILDREN WITH MEDICAL HANDICAPS
Links families of children with special healthcare needs to a network of quality providers and helps families obtain payment for the services their children need.

http://www.odh.ohio.gov/odhprograms/cmh/cwmh/bcmh1

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STATE OF OHIO – HEALTHY START
Provides information about Healthy Start, Ohio’s children’s health insurance program.

http://jfs.ohio.gov/OHP/consumers/familychild.stm

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STATE OF WISCONSIN – CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS PROGRAM
The program collaborates with national, state and community-based partners to link children to appropriate services, close service gaps, reduce duplication and develop policies to better serve families.

http://dhs.wisconsin.gov/health/children/

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Wisconsin Finding Your Way Resource Guide
A navigation guide for Wisconsin families who have children and youth with special health care needs and disabilities. It provides brief descriptions of programs, services and systems of support and gives contact information to learn more about these and other resources.

http://www.waisman.wisc.edu/cedd/pdfs/FindingYourW

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AMERICAN SICKLE CELL ANEMIA ASSOCIATION
The American Sickle Cell Anemia Association is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling, and supportive services to individuals and families at-risk for sickle cell disease.

http://www.ascaa.org/
http://www.ascaa.org/support_groups.asp

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COOLEY’S ANEMIA FOUNDATION, INC.
The Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia. The mission of The Cooley’s Anemia Foundation is to advance the treatment and cure for this blood disease, enhance the quality of life of patients, and educating the medical profession, trait carriers, and the public about thalassemia.

http://cooleysanemia.org/

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SICKLE CELL DISEASE ADVOCATES OF MINNESOTA
The Sickle Cell Disease Advocates of Minnesota exists to improve the quality of life for people living with sickle cell disease by identifying resources, providing support, and creating awareness.

http://www.sicklecellminnesota.org/

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SICKLE CELL DISEASE ASSOCIATION OF AMERICA, INC.
The Sickle Cell Disease Association of America advocates for and enhances its membership’s ability to improve the quality of health, life, and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.

http://www.sicklecelldisease.org/
http://www.sicklecelldisease.org/members/index.pht

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SICKLE CELL YAHOO GROUP
This group is for anyone who has sickle cell anemia or is involved in some way with someone who does have it.

http://health.groups.yahoo.com/group/sicklecell/

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THALASSEMIA SUPPORT FOUNDATION
The Thalassemia Support Foundation provides hope, comfort, and encouragement to those battling thalassemia.

http://www.helpthals.org/blog/

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THE SICKLE CELL FOUNDATION SUPPORT GROUP, INC.
The Support Group is dedicated to engaging the global community in promoting Sickle Cell education to those afflicted with the disease, their care givers, and communities.

http://www.sicklecellsupportgroup.org/

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THE SICKLE CELL INFORMATION CENTER
The Sickle Cell Information Center provides sickle cell patient and professional education, news, research updates, and worldwide sickle cell resources.

http://scinfo.org/

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DSCC Transition Information and Resources
The materials listed can help guide you and your child or youth as you experience life's transitions.

http://internet.dscc.uic.edu/dsccroot/parents/tran

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Envisioning My Future (Picks Up Where So You’re Not A Kid Anymore)
This 24 page guide is written for teens/young adults and families and has a separate section for youth in three different age ranges (12-14; 15-17 and 18+). Each section includes information to help youth be more in charge of their own health care, tips for parents, and a checklist of transition skills and activities. The guide also includes a list of transition related resources. Available in English and Spanish.

http://hctransitions.ichp.ufl.edu/pdfs/envisioning

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FloridaHATS
The mission of the Florida Health and Transition Services (FloridaHATS) is to ensure successful transition from pediatric to adult health care for all youth and young adults in Florida, including those with disabilities, chronic health conditions or other special health care needs. Included is a "health care transition tool box" which contains documents and links to a variety of local, state, and national resources. Materials for youth, families, and professionals are available to help in the transition from pediatric to adult health care including a variety of checklists, care plans, web links, and educational resources.

http://www.floridahats.org/

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Health Care Transitions
A website developed by the Health Care Transition initiative at the University of Florida. The mission of the Health Care Transition is to increase awareness of, gain knowledge about, and promote cooperative efforts to improve the process transitioning from child-centered (pediatric) to adult oriented health care. This website offers valuable web, video, and print resources for a variety of target audiences including adolescents with disabilities and special health care needs.

http://hctransitions.ichp.ufl.edu/

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Now That You’re In High School: It Is Time To Be More In Charge Of Your Health
This book is about teenagers…who they are now and what they want to do in the future. It includes some information and some activities that will help them be more in charge of their life, be active and healthy and be able to do more of the things they want to do now and in the future.

http://hctransitions.ichp.ufl.edu/pdfs/cms-ntyihs-

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Planning Guides
Three age-linked HCT planning guides are available, (12-14; 15-17 and 18+) and are designed to help parents and youth with special needs look at future goals, assess teen's level of independence on key health related activities, identify what parents are doing to support the teen’s autonomy in self-care, and develop a plan to transition from pediatric to adult-oriented health care.

http://hctransitions.ichp.ufl.edu/products_plannin

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Since You’re Not A Kid Anymore Its Time To Be More In Charge Of Your Health
This book is about helping young patients prepare for their future. It also includes some information and some activities to do that will help patients be more in charge of their life, be healthy and let them do more of the things they want to do now and in the future.

http://hctransitions.ichp.ufl.edu/pdfs/cms-synaka-

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Transition Health Care Checklist: Preparing For Life As An Adult
A resource to help youth and young adults with special health care needs and disabilities make a successful transition to adult living that includes their education, health and community living

http://www.waisman.wisc.edu/wrc/pdf/pubs/THCL.pdf

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NATIONAL UREA CYCLE DISORDERS FOUNDATION
The mission of the National Urea Cycle Disorders Foundation is to save and improve the lives of those affected by urea cycle disorders.

http://www.nucdf.org/

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