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March 13, 2020

TOPIC: Featured News, Advocacy, Events, 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: Patients & Members, Advocacy, Events, 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

February 29, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Rare Disease Day

Savannah’s Story in honor of Rare Disease Day

Posted at February 2, 2020 03:00 pm by Valaree DonFrancesco

I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am in the thick of my second one (a relapse), and was officially diagnosed in October with NMO.

NMO… Read More

February 29, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Rare Disease Day

Bridget’s Story in honor of Rare Disease Day

Posted at February 2, 2020 01:00 pm by Valaree DonFrancesco

I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor puzzled. I was then rushed to a different hospital, four hours away, where there were specialists that could figure… Read More

February 29, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Rare Disease Day

Ashlee’s Story in honor of Rare Disease Day

Posted at February 2, 2020 10:00 am by Valaree DonFrancesco

I was diagnosed with primary immunodeficiency when I was four years old. With primary immunodeficiency, the assumption is that “it’s just an infection” or that it’s normal because “kids get sick.” The problem was that I was never getting better and was fighting for my life every time I was… Read More