Agios Launches Advocacy Advisory Council for Thalassemia, PK Deficiency, SCD
CAMBRIDGE, Mass., Feb. 28, 2023 (GLOBE NEWSWIRE) — Agios Pharmaceuticals launched an advocacy advisory council for hemolytic anemias including thalassemia, PK deficiency, and sickle cell disease.
The council will bring together patients, caregivers and physicians from these communities, which share commonalities in different areas. This includes, underlying disease pathology, difficulties in transitioning from pediatric to adult care and immense quality of life concerns, to generate published evidence and solutions that are relevant across disease areas. Also to create a platform to raise awareness about the needs and experiences of people touched by these diseases.
“The Red Cell Revolution advisory council is designed to build connections among PK deficiency, thalassemia and sickle cell disease advocates and thought leaders, and to generate insights to raise disease awareness, inform Agios’ mission and contribute to shaping the broader hemolytic anemia field through evidence-based patient advocacy,” said Sarah Gheuens, M.D., Ph.D., chief medical officer and head of R&D at Agios. “ On Rare Disease Day, we celebrate the power of various rare disease communities coming together, finding common ground and amplifying each other’s voices; our hope is that the Red Cell Revolution can accomplish similar goals and have an important impact for rare blood disorder communities.”
To learn more about the Red Cell Revolution, listen to this episode of Thal Pals: The Alpha Beta Revolution — featuring the Cooley’s Anemia Foundation’s National President Ralph Colasanti.