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July 16, 2021

TOPIC: Patients & Members

Looking Back at an Unforgettable 2021 Living Rare, Living Stronger Forum

Posted at July 7, 2021 09:30 am by Rohan Narayanan

Last month, the National Organization for Rare Disorders (NORD) hosted their second virtual Living Rare, Living Stronger NORD Patient & Family Forum. From June 25-28, enthusiastic attendees from around the globe tuned in live for a unique weekend of inspirational stories, educational workshops, expert speakers, networking opportunities, and the Rare Impact Awards.

Highlights from a Weekend of Connection and… Read More

June 21, 2021

TOPIC: Patients & Members

Continuing the Conversation: FDA and CDC Leaders Discuss Vaccines and the Pandemic

Posted at June 6, 2021 04:59 pm by Rohan Narayanan

The National Organization for Rare Disorders (NORD), along with The ALS Association, the Cystic Fibrosis Foundation, and the Muscular Dystrophy Association recently partnered again to host a virtual conversation on COVID-19 vaccines and safety. The event featured leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC) providing key updates and insights from the administration, as well as addressing frequently asked questions on issues ranging from new virus strains to vaccine rollout plans, to… Read More

June 11, 2021

TOPIC: Patients & Members, Research, Advocacy, Patient Stories

Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Posted at June 6, 2021 10:15 am by Valaree DonFrancesco

Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According to Ray, climbing Everest was an amazing lesson about how hard it is to live without enough oxygen. While traveling home, he reflected on his journey by saying, “Although I can never fully understand what those… Read More

May 6, 2021

TOPIC: Press Releases, Patients & Members, Registries

AAMDSIF and NORD Launch New Natural History Study of Paroxysmal Nocturnal Hemoglobinuria (PNH)

Posted at May 5, 2021 10:00 am by Valaree DonFrancesco

Bethesda, MD, May 6, 2021—The Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD)® today launched the largest-ever study to research Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare bone marrow failure disease . PNH is characterized by the destruction of red blood cells, blood clots and impaired bone marrow function. While there are treatments… Read More

April 29, 2021

TOPIC: Featured News, Patients & Members, Advocacy

New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey

Posted at April 4, 2021 11:33 am by Valaree DonFrancesco

The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is in need of information or resources to assist you on your diagnosis journey, please visit our Undiagnosed Rare Disease… Read More