EMPOWERING THE PATIENT COMMUNITY Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.
900 + Advocates Engaged during virtual RDLA Monthly Webinars.
186 Rare Disease Congressional Caucus Members 27 Senators and 159 Representatives. Hosted four briefings in 2021.
Diversity and Inclusion Fellowship
Held first Diversity Roundtables event as part of Rare Disease Week 2021. Launched Rare Diversity Hub. Developed resources and tip sheets.
Starting a State Based Organization TIP SHEET In some states, rare disease advocates have joined together to unite rare disease community stakeholders to increase awareness and impact state policy. The state in which you live dictates the type and quality of care you receive, and the access to resources you have. State community action has the potential to improve access to diagnostics and treatments for the rare disease community locally.
State organizations can advocate for:
State and federal legislation Community coordination
Where Do I Start? Here are impactful ways to take action!
IDEAS
AC T I O N S
Collaboration Brings Innovation
Identify State Needs
Event Planning
Audience Selection
Online Presence/Brand
Collaborate with other advocates and organizations to engage on policy issues and to host events by bringing multiple people together with the same mission.
Determine the needs of the state’s rare disease population through surveys, group meetings, and phone calls with different community members.
Advocacy events can range from informal meet-ups to state wide conferences. Make sure all events are tailored to your state’s rare disease community.
Identify the target audience the organization seeks to engage.
The organization can benefit greatly from a name, logo, website, and social media accounts.
For ideas, visit the RDLA State Advocacy website at rareadvocates.org/ states.
Collaboration can help accomplish goals and grow the organization across the state.
Maintaining an active social media presence is a convenient and accessible way to connect with the state’s rare disease population.
Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases 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. For additional assistance, contact Shannon von Felden, RDLA Program Director, at svonfelden@everylifefoundation.org.
(202) 697-7273 (RARE)
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State Advocacy Initiative
Rare disease awareness/education
RAREADVOCATES.ORG
@RAREADVOCATES
Worked with and supported rare disease state organizations and leaders. Developed resources and tip sheets. Hosted regional and state meet and greets. Launched the State Advocacy Hub.
