Dercum’s disease. Neuromyelitis Optica. Landau Kleffner Syndrome. Malakoplakia. These are all rare diseases that you probably have never heard of. For me personally, I had no idea what they were until I googled “rare diseases”. Some of these have cures. Some of them do not. Even though they are rare, that does not mean that they should be put ALL the way on the back burner. How do we find out more about them? This is what NORD provides:
“Research gives hope to rare disease patients and their families. Since 1989, NORD has administered a Research Program through which we provide grants that have resulted in numerous published advances and at least two FDA-approved therapies. NORD is also working with rare disease organizations to launch disease-specific registries to support research.
NORD pioneered Patient Assistance Programs in 1987 and we are the leader in patient-focused PAPs today. NORD programs include free drug, co-pay and premium assistance, travel/lodging assistance for clinical trials, and expanded or emergency access.
NORD provides information about rare diseases, patient organizations and other resources for patients and families. We also promote awareness of rare diseases among physicians and other medical professionals.”
To find out more, head here: https://rarediseases.org/about/what-we-do/programs-services/
Note: For every 8 entries, 1 cent will be given to the Rare Disease Foundation
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Nice initiative of you, have my entry :)
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