Shelly Mountain has traced her family history and shares how von Willebrand disease (VWD) has impacted six generations very differently since her great-great grandmother's era. Medical treatment was difficult back…
Gaucher disease occurs when the body doesn't produce the enzyme beta-glucocerebrosidase, which is needed to break down fats, or lipids. As a result, fatty deposits collect in the spleen and liver,…
When you get a diagnosis of a rare disease, like Ehler-Danlos Syndrome (EDS), trying to learn about it can be overwhelming. Where do you even start? Do you just start…
If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But the internet can be a…
There is good news for the Castleman disease community: a new drug called SYLVANT (siltuximab) has recently been approved for use by the Food and Drug Administration. If you aren't…
Aplastic anemia is the result of the body's bone marrow not producing enough healthy red cells. This can occur because the bone marrow has been damaged by toxic chemicals, radiation, or…
El martes 15 de septiembre varios miembros del equipo digno de pacientes asistían al Taller Científico Anual de las Enfermedades Raras organizado por la Fundación EveryLife de Enfermedades Raras. El…
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