Barth Syndrome (@barthsyndrome) 's Twitter Profile
Barth Syndrome

@barthsyndrome

Barth Syndrome Foundation - saving lives through education, advances in treatments, and finding a cure for Barth syndrome.

ID: 1468000153

linkhttp://www.barthsyndrome.org calendar_today29-05-2013 18:44:47

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Barth Syndrome
@barthsyndrome

7 months ago

#BarthSyndrome advocates had the opportunity to advocate for a fair U.S. FDA review of the only investigational drug for our #RareDisease at the offices of Georgia Congressional leaders @Ossoff Senator Reverend Raphael Warnock Rep. Barry Loudermilk. Thank you for listening! #NotTooRareToCare #RareDC2024

#BarthSyndrome advocates had the opportunity to advocate for a fair <a href="/US_FDA/">U.S. FDA</a> review of the only investigational drug for our #RareDisease at the offices of Georgia Congressional leaders @Ossoff <a href="/SenatorWarnock/">Senator Reverend Raphael Warnock</a> <a href="/RepLoudermilk/">Rep. Barry Loudermilk</a>. Thank you for listening! #NotTooRareToCare #RareDC2024