We must not assume progress is linear, or even in the direction we assumed. I am sorry that so much time and energy has been wasted *this time*. But I also know this is a group that isn’t going anywhere, and it has a long memory. Stay frosty.
FDA, NIH postpone Rare Disease Day without explanation. The move comes a week after the agencies told advocates the event would be held as planned. Hundreds of families have made plans to travel to DC for a week of activities, the FDA/NIH event wld have been a highlight. www.fda.gov/news-events/...
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