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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 16, 2020

TOPIC: Events, Featured News

NORD Announces Important Update Regarding the 2020 Living Rare Forum

Posted at March 3, 2020 03:30 pm by Valaree DonFrancesco


The health and safety of the rare disease community is always our top priority at NORD. With that in mind, the Living Rare, Living Stronger NORD Patient and Family Forum will no longer be held on May 14 -16. 

We know how valuable it is for those with rare diseases… Read More

March 13, 2020

TOPIC: Advocacy, Events, Featured News, Rare Disease Day

Rare Disease Day 2020 Advocacy Events Recap

Posted at March 3, 2020 02:31 pm by Laura Mullen

In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, driving the annual campaign in the states, hosting advocacy events across the country and bringing the rare disease community together to promote awareness and help improve the… 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

March 3, 2020

TOPIC: Events, Get Involved, Patients & Members

NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum

Posted at March 3, 2020 08:00 am by Valaree DonFrancesco

NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity is supported by Horizon Therapeutics’ #RAREis program.

NORD will spotlight one… Read More