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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

April 22, 2021

TOPIC: Press Releases, Medical, Research

CDISC and NORD Partner to Develop Data Standards for Rare Diseases

Posted at April 4, 2021 11:30 am by Valaree DonFrancesco

Danbury, CT and Austin, TX – April 22, 2021 – CDISC and the National Organization for Rare Disorders (NORD®) have announced a partnership to develop global data standards for rare diseases. The data standards will be released in a Therapeutic Area User Guide that will be available at no cost on the CDISC website for researchers to leverage in… Read More

March 25, 2021

TOPIC: Press Releases, Featured News, Research, Industry

New Study Investigates the Number of Available Orphan Products, Generics and Biosimilars

Posted at March 3, 2021 09:29 am by Jennifer Huron

Washington, DC, March 25, 2021—The National Organization for Rare Disorders (NORD®) today announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases. NORD commissioned Avalere to conduct the analysis to examine if laws and regulations are helping to bring… Read More