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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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Shannon vonFelden2020-01-03 14:28:232020-01-03 14:28:23Registration Now Open for Rare Disease Week on Capitol Hill 2020
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Shannon vonFelden2019-12-23 14:22:432019-12-23 14:22:43Rare Disease Week on Capitol Hill 2020
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Grant Kerber2019-12-05 11:11:252019-12-06 14:28:15Rare Disease Legislative Advocates Honor Leaders Who Inspire Transformational Public Policy Solutions
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.
RT @SclerodermaCO: Members of the Scleroderma Foundation will be attending Rare Disease Week, February 25-28. Join US! Register here:… https://t.co/oreupZDPGq
7 hours ago
RT @WeiserTom: @bsw5020 @ChanZuckerberg This is what I love about Rare Disease Week in DC by @RareAdvocates . Many diseases...one united voice
9 hours ago
