Blogs

RDLA’s March Legislative Webinar/Conference

March 3, 2017

RDLA’s March Legislative Webinar & Conference Call
Wednesday, March 15th: 1:00 pm to 2:00 pm EST

Once a month RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.

These meetings help facilitate open dialog about legislation that affects the rare disease community. They are open to the public and the media. We ask that media formally announce their participation and refrain from quoting any of the discussion during the meeting. We encourage media to follow up with participants after the meeting for direct quotes.

Agenda:

1. Capitol Hill Update: Max Bronstein, Chief Advocacy and Science Policy Officer, EveryLife Foundation for Rare Diseases

2. Rare Disease Week on Capitol Hill 2017: Vignesh Ganapathy, Associate Director of Advocacy and Government Relations, EveryLife Foundation for Rare Diseases

Agenda is OPEN. Please submit possible agenda items to [email protected]

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