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Shannon vonFelden2019-08-19 16:16:362019-08-19 16:16:36Urge Legislators to Attend Rare Disease Caucus Briefing on September 11th
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Shannon vonFelden2019-06-28 09:55:462019-06-28 09:59:01Rare New England asks Massachusetts Advocates to Contact Legislators to Cosponsor H.1934 and SD.2264 to Create A Massachusetts Rare Disease Advisory Council
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Shannon vonFelden2019-06-27 15:40:472019-06-28 09:58:06NFED Asks Advocates to Contact Congress to Cosponsor the Ensuring Lasting Smiles Act
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Grant Kerber2020-06-10 11:12:282020-06-10 11:12:28RDLA and SmithSolve Launch Fast Forward for RARE
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Shannon vonFelden2020-05-04 10:38:462020-05-04 10:38:46Register for Rare Across America
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Grant Kerber2020-03-11 12:16:122020-03-11 13:07:11900 Patients and Families Attend Rare Disease Week on Capitol Hill 2020
Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA is committed to growing the patient advocacy community and working collectively, thereby amplifying the patient voice to be heard by local, state, and federal policy makers.
Share your before, during, or after experience using #RareAcrossAmerica on any of your social media channels and as… https://t.co/VlY1jEsn28
1 day ago
#RareAcrossAmerica meetings with Members of Congress and staffers have begun!
Our amazing RDLA staff prepared this… https://t.co/dFdDgA4HM5
1 day ago
