Archive for April, 2017

The FOP one was the BEST table at the rare disease conference…

April 2nd, 2017

Read More

0

On Thursday and Friday of this week, I attended the annual conference of the Canadian Organization for Rare Diseases (CORD). I'm used to being the only person in the FOP community at these things, but not this time... On this occasion, I and two other moms of kids with fibrodysplasia ossificans progressiva attended as guests of Clementia Pharmaceuticals. Clementia is the company doing clinical testing of Palovarotene, a potential drug to treat FOP, and it sent along two representatives - Stephanie Hoffman and Eric Grinstead. The result was that there were 5 OF US sitting together at the conference. We ...