March 27, 2020
TOPIC: Featured News, Research
Posted at March 3, 2020 12:19 pm by Laura Mullen
The National Organization for Rare Disorders (NORD®) is excited to announce that a new peer-reviewed manuscript written by members of our research team has been published as a leading article by the journal Pharmaceutical Medicine.
The paper, entitled “Establishing Patient Registries for Rare Diseases: Rationale and Challenges,” begins by highlighting common barriers… Read More
March 24, 2020
TOPIC: Featured News
Posted at March 3, 2020 10:42 am by Laura Mullen
Washington, DC, March 24, 2020–The National Organization for Rare Disorders (NORD®) is pleased to welcome Prashant Goel as the new Vice President of Information Technology, based in the Danbury, CT office. Prashant, who joined NORD in February, leads a team of professionals with extensive knowledge of developing scalable enterprise-level systems, portals, and services that process millions of transactions daily… Read More
March 23, 2020
TOPIC: Events, Featured News, Patients & Members
Posted at March 3, 2020 08:00 am by Laura Mullen
Editor’s Note: The VHL Alliance’s Jeffersonian Dinner described below took place in early March. As we now practice social distancing in light of COVID-19, in-person events of this nature should not currently be taking place. However, the Jeffersonian Dinner presents an interesting kind of event for non-profits to consider for the future when such gatherings are again a possibility.
March 21, 2020
TOPIC: Featured News, Patients & Members
Posted at March 3, 2020 11:42 am by Laura Mullen
NORD is featured as a rare disease resource and Dr. Marshall Summar, Chairman of NORD’s Board of Directors, is quoted extensively in an article published by US News and World Report that provides information and advice for parents dealing with a recent rare disease diagnosis for their child.
March 20, 2020
TOPIC: Featured News, Industry, Medical, Patients & Members
Posted at March 3, 2020 09:32 am by Valaree DonFrancesco
The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus pandemic on all elements of our work including mission-critical… Read More