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July 16, 2021

TOPIC: Patients & Members

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

Posted 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

July 15, 2021

TOPIC: Press Releases

NORD Named an Official Charity Partner of the 2021 TCS New York City Marathon

Posted by Rohan Narayanan

Washington, DC – The National Organization for Rare Disorders® (NORD) was named an Official Charity Partner for the 2021 TCS New York City Marathon, taking place on November 7. This year serves as the 50th celebratory running of the marathon. NORD will be among the more than 400 official charity partners providing thousands of runners the opportunity to run in… Read More

June 21, 2021

TOPIC: Patients & Members

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

Posted 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 17, 2021

TOPIC: Press Releases, Advocacy

NORD Issues Statement on California v. Texas Ruling

Posted by Valaree DonFrancesco

Washington, DC, June 17, 2021—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD) regarding today’s US Supreme Court decision in California v. Texas:

“Today’s ruling is a triumph for all patients with a rare disorder and their loved ones,” said Mr. Saltonstall. “Prior to the passage of the Affordable… Read More

June 11, 2021

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

Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Posted 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