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Patient Assistance Programs that can help patients afforddrugs, offer medical assistance, and help pay medical...

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with...

My rare disease is called sporadic visceral neuropathy. There are only four known recorded cases worldwide and very little research on the disease....

Alone we are Rare. Together we are strong. This motto exemplifies the mindset of the rare disease community and is as true today as...

The Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry registry powered by NORD...

  • 1615803218184863749 Profile photo of Madelyn

    Make a mark on the future of PNH research by enrolling in the Global PNH Patient Registry! Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. https://t.co/EgBjcFvgTA - view on twitter