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July 15, 2021

TOPIC: Press Releases

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

Posted at July 7, 2021 11:40 am 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 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

May 27, 2021

TOPIC: Press Releases, Medical, Research

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

Posted at May 5, 2021 07:55 am 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 at May 5, 2021 07:55 am 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 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