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Archives for: August 31st, 2017

FDA Announces First Gene Therapy in U.S.

Written by Mary Dunkle on August 31, 2017

In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood… Read More

Advance the Dialogue at the NORD Rare Summit

Written by Christina Jensen on August 15, 2017
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It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare… Read More

Providence Full and Half Marathon

Written by Christina Jensen on May 7, 2017

Running for Rare, NORD’s signature charity marathon team, will be participating in the 2017 Providence Marathon. Click here to apply.


About the Team

When you join Running for Rare, you are joining a group of individuals who are passionate and committed to an important cause. Running for… Read More

St. Jude Rock ‘N’ Roll Nashville Marathon

Written by Christina Jensen on April 29, 2017

Running for Rare, NORD’s signature charity marathon team, will be participating in the 2017 Nashville Marathon. Click here to apply.


About the Team

When you join Running for Rare, you are joining a group of individuals who are passionate and committed to an important cause. Running for… Read More

Boston Marathon

Written by Christina Jensen on April 17, 2017

Running for Rare, NORD’s signature charity marathon team, will be participating in the 2017 Boston Marathon. Applications for this marathon are closed.


About the Team

When you join Running for Rare, you are joining a group of individuals who are passionate and committed to an important cause. Running for Rare offers… Read More