Featured News Archives - NORD (National Organization for Rare Disorders)

March 27, 2020

Pharmaceutical Medicine Publishes Paper by NORD Research Team as a Leading Article

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

Tags: IAMRARE, patient registries, Pharmaceutical Medicine, Rare disease research

March 24, 2020

TOPIC: Featured News

NORD Welcomes Prashant Goel as Vice President of Information Technology

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

Tags: Adaptive Marketing, CCPA, Columbia University’s Fu Foundation School of Engineering, COPPA, diagnostic odyssey, Dynata, GDPR, HIPAA, IAMRARE, PCI, PHI, RareCare, United Healthcare, Wipro

March 23, 2020

TOPIC: Events, Featured News, Patients & Members

NORD Member VHL Alliance Held Jeffersonian Dinner in Early March

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.

Tags: How Full Is Your Bucket?, Ilene Sussman, Jeffersonian dinner, National Cancer Institute, PhD, Ramaprasad Srinivasan MD, Thomas Jefferson, Tom Rath, VHL Alliance

March 21, 2020

TOPIC: Featured News, Patients & Members

US News & World Report Features NORD and Dr. Marshall Summar in “What To Do If Your Child Is Diagnosed with a Rare Disease”

Posted at March 3, 2020 11:42 am by Laura Mullen

#NORDinthenews

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.

https://health.usnews.com/conditions/articles/when-your-child-has-a-rare-disease

Tags: Children's National Hospital, cyclodextrin, Food and Drug Administration, National Organization for Rare Disorders, Niemann-Pick disease type C1, NORD, Rare Disease Institute, Rush University Hospital, US News and World Report, Zavesca

March 20, 2020

TOPIC: Featured News, Industry, Medical, Patients & Members

COVID-19 Resources for Non-profit Leaders and the Community

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

Tags: coronavirus, covid-19, covid19, Families, health crisis, non-profit leaders, nonprofit organizations, patients, resources

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