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Rare Patient Voice - A Konovo Company

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Weekly Warrior: Meet Jen

February 10, 2023 Laura Mullen

“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

Filed Under: Patient

RPV’s Jessica Bolden Shares Her Voice for February

February 8, 2023 Laura Mullen

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

Filed Under: Business, Patient

Weekly Warrior: Meet Angela

February 3, 2023 Laura Mullen

“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

Filed Under: Patient

Weekly Warrior: Meet Emily

January 27, 2023 Laura Mullen

  “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

Filed Under: Patient

Weekly Warrior: Meet Dani

January 20, 2023 Laura Mullen

“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

Filed Under: Patient

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Rare Patient Voice

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