Thank you @RepMikeQuigley for being part of the rare disease caucus for a while. We had a great meeting with Naomi & @SickCells yesterday and will keep her updated on the reauthorization of #newbornscreening #RareDC2019 #BattenDisease #NoahsHope #sicklecell
It's #RareDiseaseWeek on Capitol Hill. Of the 7,000 rare diseases, +90% do not have FDA approved treatment. I'm grateful and inspired to see advocates & concerned citizens in the halls of Congress championing lifesaving medical research. #RareDC2019https://twitter.com/RareAdvocates/status/1100085237621628929 …
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