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. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.
RDLA provides free resources for successful grassroots advocacy.
RDLA Advocacy Events:
- Rare Disease Week on Capitol Hill
- In-District Lobby Days
- Legislative Conferences
- Rare Disease Congressional Caucus Briefings
- RareVoice Awards
- Monthly Conference Calls/Webinars
Resources:
- Monthly Action Alert Blasts
- Congressional Scorecards
- Online Advocacy Tools to Contact Congress
- DC Office Space
- Consulting on Legislative Strategies
RDLA is a clearinghouse of ideas that is open to all members of the rare disease community with an interest in sharing information around common causes and advocating for the introduction or enactment of legislation. It does not promote any specific policy, but provides support to all rare disease organizations seeking introduction/enactment of legislation. RDLA’s monthly meetings and website are an educational resource and a platform for individual organizations to promote their legislation.
The Program Manager for RDLA is Shannon von Felden.
Office: (202) 697-RARE(7273) • Fax: (415) 884-0562
svonfelden@everylifefoundation.org
RDLA on Facebook: fb.me/RareAdvocacy
RDLA on Twitter: twitter.com/RareAdvocates
RDLA is a program of the EveryLife Foundation for Rare Diseases, a 501(c)3 nonprofit organization dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.
