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

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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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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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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FOD (Fatty Oxidation Disorders) Family Support Group
The FOD Family Support Group is an international Support Group and resource for all 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, which can be a life-threatening disorder especially when undiagnosed and untreated. The FOD Group is an all volunteer 501c3 non-profit corporation that raises funds to train new FOD Clinicians and to further FOD Research. Ongoing telephone and online practical/emotional/grief support is provided throughout the world and we strive to offer a National Metabolic Conference every two years for Families and Professionals. Deb also offers pro bono face-to-face grief consults to bereaved parents in the Lansing, MI area. Please refer to www.fodsupport.org for more information or contact Deb at 517.381.1940.

www.fodsupport.org

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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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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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Healthy & Ready to Work
Healthy & Ready to Work provides information and connections to health and transition expertise nationwide. Health impacts all aspects of life. Success in the classroom, within the community, and on the job requires that young people with special health care needs stay healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions. This site focuses on understanding systems, access to quality health care, and increasing the involvement of youth. It also includes provider preparation plus tools and resources needed to make more informed choices

http://www.hrtw.org/

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