“Hi, my name is Jen. I suffer from Myasthenia Gravis. It is a rare neuromuscular autoimmune disease. My body creates antibodies that block the receiving signals in my muscles. So my … READ MORE
RPV’s Jessica Bolden Shares Her Voice for February
In honor of Black History Month and leading up to Rare Disease Day, Rare Patient Voice proposal development associate Jessica Bolden shares her voice as a woman living with Sickle … READ MORE
Weekly Warrior: Meet Angela
“Hello! I’m Angela Davis. I’ve suffered Stiff Person Syndrome symptoms since I nearly died at birth due to severe body-wide rigidity as well as leg and foot malformation. Thanks to … READ MORE
Weekly Warrior: Meet Emily
“My name is Emily (@healmewholeheartedly) and I am a 32 year-old living with Sjögren’s Syndrome, FSGS, and Pulmonary Arterial Hypertension (PAH). I’ve known chronic illness my whole life, and … READ MORE
Weekly Warrior: Meet Dani
“Hi, I’m Dani. I’m 19 and from New Zealand. I’m a survivor of E-coli O157:h7 and Hemolytic Uremic Syndrome (HUS). Both life threatening illnesses have left me with multiple chronic … READ MORE
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