One thing that isn’t getting enough attention is how the pandemic is directly impacting the lives of rare disease patients. In many cases they are the people most at risk when it comes to the virus. Having or being treated for a rare disease leaves many of these patients immunocompromised.
This pandemic has shed light on many aspects of healthcare, and while much of it has been unsettling, one thing is becoming clear to the general public—the path to treatments is an extremely complex one.
There has always been a huge amount of misinformation surrounding health. From the ancient notion that many diseases were caused by “bad blood,” to traveling medicine shows that employed the same sales tactics used by carnival barkers, humans are eager to improve their wellness and alleviate their illnesses, and there have always been charlatans lining up to take advantage. For example, the term “snake oil” is used to describe any worthless product purported to have immense value by deceptive ma
Tomorrow is Rare Disease Day at NIH and TREND Community is excited to unveil one of our most ambitious projects. We collaborated with a number of rare disease communities (PANS, PANDAS, autoimmune encephalitis, Wolf-Hirschhorn syndrome, Pitt-Hopkins syndrome, Chromosome 8p disorder, Prader-Willi syndrome, hypoxic-ischemic encephalopathy, pituitary tumors, GM1/GM2 gangliosidosis and Canavan, epidermolysis bullosa, congenital rubella syndrome, cutis marmorata telangiectatica congenita, and chronic