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
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 16, 2020
TOPIC: Featured News
#NORDinthenews – Article on Facts Around Rare Disease Features NORD’s Kristen Angell and Vanessa Boulanger
Posted by Laura Mullen
#NORDinthenews
NORD’s Associate Director of Advocacy Kristen Angell and Director of Research Programs Vanessa Boulanger were featured in an article in the Newtown Bee (Newtown, CT) on prevalence and other facts around rare disease on March 13.
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
