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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 vonFelden2019-10-17 09:17:262019-10-17 09:40:142019 RareVoice Awards Finalists Announced
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Shannon vonFelden2019-10-02 09:26:392019-10-02 09:26:39Congratulations Advocates on Over 300 Rare Across America Meetings!
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Shannon vonFelden2019-10-01 11:31:142019-10-01 11:31:14Travel Stipend Application Open for 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.
Do you live in one of the highlighted states & want to use your voice on #CapitolHill to create change for the… https://t.co/tRQf7sIiQe
2 days ago
We are pleased to announce the 2019 RareVoice Awards Master of Ceremonies: @mikeporath, Founder & CEO of… https://t.co/OcVLXzKcfd
4 days ago
