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 collaboratively, thereby amplifying the patient voice to be heard by local, state, and federal policy makers.
RDLA provides free grassroots advocacy resources such as action alerts, monthly webinars and newsletters, and legislative scorecard. It also hosts a variety of events which are free to patients and caregivers.
RDLA Advocacy Events:
- Rare Disease Week on Capitol Hill
- Rare Across America
- 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 at the RareHub
- Consulting on Legislative Strategies
RDLA Staff Members:
- RDLA Program Director: Shannon von Felden, svonfelden@everylifefoundation.org
- RDLA Program Coordinator: Katelyn Laws, klaws@everylifefoundation.org
- State Advocacy Fellow: Swapna Kakani, skakani@everylifefoundation.org
- Diversity Inclusion Advocacy Fellow: Adrian Palau-Tejeda, apalau-tejeda@everylifefoundation.org
- Medical Foods Policy Fellow: Kylie Barber, kbarber@everylifefoundation.org
RDLA Social Media:
- RDLA on Facebook: fb.me/RareAdvocates
- RDLA on Twitter: twitter.com/RareAdvocates
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.
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.
