Make an impact on federal policy close to your home.
Share your rare disease story.
Meet other rare disease advocates.
CLICK HERE TO REGISTER!
WHEN
July 29 – September 8, 2019
(Registration is open from May 8 through July 3)
WHERE
The local offices of your Members of Congress
WHAT
Rare Disease Legislative Advocates (RDLA) staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The meetings take place in the Member’s district office during the month of August, while Congress is in recess from July 29th to September 8th, 2019. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.
No prior advocacy experience is necessary.
Registration for this event and all RDLA events are free for rare disease advocates.
SAVE THE DATE
Thursday, July 25, 2019 at 2pm – Training webinar to prepare advocates for their meetings.
Resources and materials (Check back for updated materials in late July, 2019)
In-District Lobby Days informational webinar (Recording from Thursday, July 26th)
Slides from In-District Lobby Days informational webinar
Sample thank you letter follow up for Congressional meetings
Free toolkit by Global Genes on Building Relationships with Your Representatives
“During my meeting I was able to share my story about living with sickle cell disease and how these policies can benefit the disease community. I want to thank the RDLA for preparing me and giving me such a great opportunity to share my thoughts and opinions.” – Kadeem, Somerville, MA
For more information, please contact:
Shannon von Felden, Rare Disease Legislative Advocates Program Manager
svonfelden@everylifefoundation.org
