A Program of the EveryLife Foundation for Rare Diseases
In-District Lobby Days
Regional Legislative Conferences
Rare Disease Week on Capitol Hill
2016 Rare Disease Week – Legislative Conference
2016 Rare Disease Week – Lobby Day Breakfast
2016 Rare Disease Week – Rare Disease Congressional Caucus Briefing
Nominations close Sunday, July 31st, 2016!
Your Organization / Disease Affiliation
Patient Advocate/Patient Organization for Federal Advocacy
Patient Advocate/Patient Organization for State Advocacy
Government Agency Staff
Nominee Email Address
(nominators will remain anonymous)
Relevant websites or links of the nominee’s accomplishments
Can include links to news articles, stories, blogs, or Youtube videos, anything that will help the nominations committee get a deeper understanding of the nominee.
Tell us about the nominee
What is your relationship to the nominee?
What actions has the nominee taken to ensure the needs of rare disease patients were considered in policy or legislation?
Please explain how the policy or legislation advocated by the nominee was important to the rare disease community?
Why should the nominee win this award?
Enter your email address below to receive news, action alerts, and invitations.
Scroll to top