Memo: August 8, 2021
RE: July 2021 Policy Update
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In July, we focused entirely on our community Congressional Hearing Request. Read our updates below to learn more about our own initiative, as well as collaborative efforts with other organizations.
1. Sick Cells met with 7 Congressional offices and expects to meet with at least one more to discuss a potential FY22 Congressional hearing on the 2020 NASEM Report on SCD. This brings our total number of meetings with offices to over 50 for 2021. Offices targeted in our July outreach include:
- Rep. Bill Foster
- Rep. Danny Davis
- Rep. Bobby Rush
- Rep. Barbara Lee
- Rep. G.K. Butterfield
- Rep. Michael Burgess
- Rep. Terri Sewell
- Rep. Robin Kelly
Conversations with these offices have yielded a positive response to this initiative. Continuing discussions will focus on determining how to best work with other Members, agencies, and community-based organizations to maintain momentum on this report and its associated programs.
2. Sick Cells attended ASH’s quarterly policy meeting
As a member organization of the American Society of Hematology’s SCD Coalition, Sick
Cells continues to build relationships and collaborate on policy issues.
3. NORD announced a new RDAC in Louisiana
Sick Cells was a signing organization on the RDAC request letters in Louisiana. The council
is currently recruiting members. Contact RDAC@rarediseases.org if you are interested in
getting involved.