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Maryland Department Of Health And Mental Hygiene

Children And Youth With Special Health Care Needs

Accessible Resource Locator

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For assistance call us at 1-800-638-8864

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We found 9 results matching your search criteria 
National Human Genome Research Institute
Information on genetics, rare diseases, research studies and funding grants for medications for rare disorders.
Links to More Info:
Contact Info:
301-402-0911
31 Center Drive, Bethesda, MD, 20892

Center for Parent Information and Resources
Your central “Hub” of information and products created for the network of Parent Centers serving families of children with disabilities All the materials found on the CPIR Hub have been created and archived for Parent Centers around the country to help them provide support and services to the families they serve.
Contact Info:
973-642-8100


Unique
Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide.


Mucolipidosis IV Foundation
ML4 is a genetic disease causing mental retardation, retinal degeneration, and limited lifespan. The mission of the Foundation is to fund, promote, and support medical research dedicated to developing treatments and a cure for ML4.
Contact Info:
877-454-5965
719 East 17th Street, Brooklyn, NY, 11230

Hunter's Hope
Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, we strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.
Links to More Info:
Contact Info:
716-667-1200
6368 West Quaker Street, Orchard Park, NY, 14127

NBS connect
NBS Connect serves as an internet-based support network for parents, guardians and individuals with inborn errors of metabolism. NBS Connect will capture and analyze information related to inborn errors of metabolism in an effort to assess gaps in service, access to care and to develop best standards of practice for clinical management and connect families to research opportunities. NBS Connect strives to improve the quality of care of individuals with inherited metabolic disorders (IMDs).
Contact Info:
404-778-0553


Mitoaction
MitoAction's mission is to improve quality of life for all who are affected by mitochondrial disorders through support, education and advocacy initiatives.
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Contact Info:
888-648-6411


Charcot-Marie-Tooth Association
Our mission … to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure. Our vision … a world without CMT.
Links to More Info:
Contact Info:
800-606-2682


Jeffery Modell Foundation
More than thirty years after its creation, the Jeffrey Modell Foundation continues its mission of hope, advocacy, and action by vigorously supporting physicians, researchers, and the ever expanding global patient community - directing its efforts toward early diagnosis, meaningful treatments, equal access to care, and ultimately, cures for Primary Immunodeficiency.
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