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March 20, 2020

TOPIC: Featured News, Patient Stories, Patients & Members

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

Posted 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 16, 2020

TOPIC: Events, Featured News

NORD Announces Important Update Regarding the 2020 Living Rare Forum

Posted 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 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 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