patient advocacy

‘NMOSD Won’t Stop Me’ survey highlights patient self-advocacy

For one in three people with neuromyelitis optica spectrum disorder (NMOSD), bad days — marked by high levels of debilitating symptoms — are more common than good days. Patients who are more comfortable talking with their doctors about their symptoms reported fewer bad days and greater treatment…

Make It Count: A Visit With Prominent NMO Advocate Sumaira Ahmed

I have never met Sumaira Ahmed in person, but her energy and passion radiate through computer screens and phone calls. It’s what convinced many of us to follow her charge and become ambassadors for her nonprofit organization, The Sumaira Foundation for NMO, or TSF for short. As…

Register Now for Global Genes’ RARE Patient Advocacy Summit

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…