December 2022 Policy Memo

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Memo: December 31, 2022

Our policy work in December was shortened due to Sick Cells’ holiday closure, beginning December 19th through the new year. We worked on wrapping up items from 2022 and planning exciting things for 2023 – stay tuned in January for a very important announcement! This month we…

1. Attended final workgroup meetings for various workgroups:

a. Sickle Cell Disease Partnership

b. Personalized Medicine Coalition

c. EveryLife Community Congress

d. American Society of Hematology: Sickle Cell Disease Coalition

We will continue our involvement in these workroups and more in 2023. Workgroups both within and outside of the sickle cell disease community help us keep in touch with policy priorities across the rare disease community and help us keep a pulse on much of the activity on the Hill. Lastly, collaborations remain at the root of our work; they strengthen our own priorities and make us better.

2. Attended two webinars related to our ongoing work on health technology assessments and with Medicaid.

a. Addressing Health-Related Social Needs and Social Determinants of Health in Medicaid (Hosted by Center for Medicaid and CHIP Services)

b. ICER’s Alzheimer’s Disease Review Voices for Patient Access Webinar (Hosted by Alliance for Patient Access)

Our staff often spends time attending external webinars to expand our learning in certain areas and identify opportunities in our own efforts.

Please contact with questions.

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