May 2025 - Congress is currently considering proposed cuts to Medicaid that will have both short and long term consequences that may impact members of our community within the United States. As a partner of the National Organization of Rare Disorders (NORD), we invite you to learn more about their efforts to address these proposed changes with members of Congress.

April 2025 - U.S. Senators Hold Forum on Funding Cuts to the National Institutes of Health

October 2020 - The Lymphoma Coalition is one of the Foundation's collaborative partners helping to extend our reach to patients outside of the United States. Coalition leaders Lorna Warwick (CEO) and Natalie Dren (Research Coordinator) joined Susan Thornton for this panel discussion highlighting outcomes from the recent global patient survey. The Lymphoma Coalition launches its Global Patient Survey every two years with the goal of bringing up-to-date patients' life experiences to the medical, research and policy tables.

April 2020 - CMS to encourage Medicare Advantage and Part D plans to relax prior authorization and step therapy standards for medically necessary prescribed or ordered treatments and services during national pandemics.

#ProtectOurCare

The National Coalition for Cancer Survivorship's (NCCS) resource page for policy updates, calls to action and survivor stories related to the Affordable Care Act. As Congress considers repealing and replacing the ACA, the NCCS will provide regular updates about replacement proposals, what they mean for cancer survivors, and how survivors and advocates can make their voices heard in this debate.

The National Organization for Rare Disorders' (NORD) State Report Card serves as an evaluation of state policies pertinent to the rare disease community. With it, NORD hopes to provide a road map to the rare disease community of where each state can improve and, ultimately, push forward the discussion on rare disease public policy.

Learn more about how your state rates on the key issues of medical foods, newborn screening, prescription drug cost sharing, medicaid/CHIP eligibility, biosimilars, step thearpy and rare disease councils.

With their website, the FDA welcomes the unique perspective of patients, family members, caregivers and patient advocates directly affected by serious disease, to the Agency’s decision-making processes. Get involved....your voice counts!

Ever wonder why you may be asked to frequently contact your congressional representative on the same bill? Truth is, Congress can vote on a bill five times before it becomes law. Why five times? And, why is it so important for you to act each time?

Watch the American Cancer Society's 90-second video to explain why.