On May 13, the EveryLife Foundation hosted our inaugural Community Congress Leader Hill Day. These powerhouse advocates, who earlier in the week participated in the EveryLife Foundation's Scientific Workshop, met with key Congressional offices to preview our rare disease community's policy priorities as we prepare to engage in PDUFA VIII legislative activities.
This united group of national rare disease patient advocacy organization leaders, who have also been active in coalition regulatory discussions, included: Andrew Rosen,
@NAF_Ataxia; Brandi Underwood, International FOXP1 Foundation; Cara O'Neill,
@CureSanfilippoF; Fabienne Antoine-Nasser,
@SickCells; Jess Myers,
@US_HAEA ; Dr. Kim Stephens,
@Projectalive; Lynn Hano Albizo,
@immunedeficienC; Pat Furlong,
@ParentProjectMD; Roxanne Yaghoubi,
@EpilepsyFdn; Ryan Fischer, Foundation for Angelman Syndrome Therapeutics (FAST); Terri L. Klein,
@MPSSociety; Allie Ladd,
@CureMPS1, Inc., and Tricha Shivas, Foundation Sarcoidosis Research. We are so grateful for their participation!
And thank you to all members of our Community Congress whose efforts and expertise contributed to the policy priorities reflected in these Hill discussions. Our
#raredisease community leadership’s collective voice is a force multiplier at a time when regulatory momentum is most critical. And we are just getting started.
To learn more about Community Congress, visit:
everylifefoundation.org/comm…
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