WebHelp with Rare Disease. Whether you need help getting a diagnosis, finding resources to assist in finding a specialist, finding a clinical trial, paying medical bills, or affording drugs, NORD is here. We provide resources, rare disease information, and ways to get involved. WebApr 27, 2024 · (For more information on this disorder, choose “Hyper IgM” as your search term in the Rare Disease Database.) X-linked lymphoproliferative (XLP) syndrome is an extremely rare inherited primary immunodeficiency disorder characterized by a defective immune response to infection with the Epstein-Barr virus (EBV).
How NORD Can Help - Resources, Financial Support,
WebMar 8, 2024 · The purpose of the workgroup is to identify best practices that could improve the awareness of rare diseases and referral of people with potential rare diseases to specialists, and to evaluate barriers to treatment, including financial barriers on access to care. The Department will prepare a report based on the workgroup's recommendations. … WebThe Assistance Fund is an independent charitable patient assistance organization that provides support for adults and children with rare and chronic diseases. The organization may help provide families with financial and travel assistance. murphy\\u0027s fish bar churchill
Financial Support: Help Paying for Gaucher Disease Treatment
WebNov 14, 2016 · Disease Overview. Antiphospholipid syndrome (APS) is a rare autoimmune disorder characterized by recurring blood clots (thromboses). Blood clots can form in any blood vessel of the body. The specific symptoms and severity of APS vary greatly from person to person depending upon the exact location of a blood clot and the organ system … WebOct 6, 2016 · My youngest daughter who is 3 years old suffers from a very rare metabolic disease called Congenital Generalized Lipodystrophy. Her specific mutation is (AGPAT2). This disease occurs in 1 of 10 ... WebWhether you need help getting a diagnosis, finding resources to assist in finding a specialist, finding a clinical trial, paying medical bills, or affording drugs, NORD is here. We provide resources, rare disease information, and ways to get involved. With our network of members, advocates, and partners, we make critical connections and work to ... murphy\\u0027s florist martin tn