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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

May 27, 2021

TOPIC: Press Releases, Medical, Research

NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer

Posted by Valaree DonFrancesco

Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of Edward Neilan, MD, PhD, to the new position of Chief Medical and Scientific Officer. Dr. Neilan, an internationally recognized physician-scientist and rare genetic disease expert, will oversee… Read More

May 18, 2021

TOPIC: Press Releases

NORD Announces New Board Chair and New Member of its Board of Directors

Posted by Valaree DonFrancesco

Washington, DC, May 18, 2021—The National Organization for Rare Disorders (NORD®) announced that during a recent Board of Directors meeting, Kay Holcombe was elected as Chair and Dennis Jackman joined as a new Board member. Each provides a dynamic and strong track record of leadership in public and private health sectors and in biotech innovation that will be instrumental… 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 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