| National Human Genome Research Institute |
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| Visit Website |
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| Information on genetics, rare diseases, research studies and funding grants for medications for rare disorders. |
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| Links to More Info: |
| rare disorders/syndromes |
| Financial assistance |
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| 301-402-0911 |
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| 31 Center Drive, Bethesda, MD, 20892
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| Center for Parent Information and Resources |
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| Visit Website |
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| 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. |
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| 973-642-8100 |
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| Unique |
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| Visit Website |
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| 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. |
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| Mucolipidosis IV Foundation |
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| Visit Website |
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| 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. |
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| 877-454-5965 |
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| 719 East 17th Street, Brooklyn, NY, 11230
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| Hunter's Hope |
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| Visit Website |
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| 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.
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| Equipment and supply exchange |
| Hunters Wish grants |
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| Contact Info: |
| 716-667-1200 |
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| 6368 West Quaker Street, Orchard Park, NY, 14127
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| NBS connect |
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| Visit Website |
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| 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). |
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| 404-778-0553 |
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| Jeffery Modell Foundation |
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| Visit Website |
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| 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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| Online Support |
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| The Genetic Alliance |
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| Visit Website |
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| Individuals and families need and deserve opportunities to be active participants in health, from services in traditional health settings to groundbreaking research endeavors.Genetic Alliance is resolute that people come first. We partner with individuals and communities to transform health systems to respond to what people most need. We convene powerful networks, deliver actionable information, build intuitive tools, and drive policy decisions. |
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| Contact Info: |
| 202-966-5557 |
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| 4301 Connecticut Ave NW, , DC, 20008
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| Genetic and Rare Conditions Site |
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| Visit Website |
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| Online listing of rare conditions and disorders with links to information. |
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