Nominations Now Open for RareVoice Awards

rare-voice

Rare Disease Legislative Advocates is pleased to open nominations for the 5th Annual RareVoice Awards, a celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government.

Wednesday, November 16, 2016
Arena Stage in Washington, DC

If you know of someone who has been a “Voice” for the rare disease community and should be honored for their work, please click here to submit your nomination.

RareVoice Award nominations are open to the public.  We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders and political advocates in their state and our nation. We have nominations open for the following categories: Congressional Staff, Patient Advocate or Patient Organization (at the state or federal level), and Government Agency Staff.

Deadline to submit nominations is July 31, 2016.

Registration Open for Regional Legislative Conferences and In-District Lobby Days

Rare Disease Legislative Advocates will host In-District Lobby Days to facilitate meetings for rare advocates across the country with their elected federal officials during the summer Congressional recess (July 18th through September 5th).

Registration is open through July 1st.

Federal elected officials need to hear regularly from constituents affected by rare disease.  Meeting with your Representative and Senators throughout the year is critical to building a relationship.  These meetings are an opportunity to invite them to join the Rare Disease Congressional Caucus and to highlight legislation that could be beneficial to the rare disease community.

To help advocates prepare, we are holding regional Legislative Conferences in Boston on June 28th and in both Chicago and Seattle on June 30th. These half-day conferences will feature remarks from federal elected officials, academics, patient advocates and other rare disease stakeholders.  Lunch will be provided. Registration will be available here through June 22nd. Don’t miss the opportunity to learn and network with other local advocates!

We will also hold two preparatory webinars.  The first, to be held on June 16th at 2pm ET/11am PT, will provide an overview of the regional Legislative Conferences and In-District Lobby Days. The second, to be held on July 13th at 2pm ET/11am PT, will cover In-District Lobby Days in more detail including legislative issues which advocates may want to raise in their meetings.

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