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June 17, 2021

TOPIC: Press Releases, Advocacy

NORD Issues Statement on California v. Texas Ruling

Posted at June 6, 2021 11:33 am 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 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

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

February 26, 2021

TOPIC: Patients & Members, Advocacy, Patient Stories, Rare Disease Day

Jason and Nola’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 02:41 pm by Valaree DonFrancesco

I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect of daily life. I find myself having to be more attentive and always “on” when I am with Nola. My career had to… Read More

February 25, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Rare Disease Day, #NORDintheNews

NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Posted at February 2, 2021 12:14 pm by Valaree DonFrancesco

The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare Disease Day, storytelling, NORD’s “Show Your Stripes” campaign, and how the organization’s patient advocacy work has continued during the pandemic.

https://www.connectingals.org/episodes/showing-our-stripes-for-rare-disease-day

#NORDintheNews