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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.


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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


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

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

March 20, 2020

TOPIC: Featured News, Head of the Herd, Patient Stories, Patients & Members

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

Posted at March 3, 2020 07:59 am by Laura Mullen

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc

Michele most frequently checks her… Facebook page

Michele advocates for those living with… Hypomyelination with atrophy of basal… Read More

March 11, 2020

TOPIC: Advocacy, Events, Patients & Members, Rare Disease Day

Rare Disease Day 2020 and the Mission I Choose to Accept, by Debbie Drell, Director of Membership for NORD

Posted at March 3, 2020 08:14 am by Laura Mullen

If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of information on the disease, or trying to even get to an accurate diagnosis!). The number one priority for me after my sister was diagnosed with a rare,… Read More