Virtual meeting to bring sickle cell community together to inform future drug development

HANOVER, Md. — The Sickle Cell Voices Alliance, a partnership of the Sickle Cell Disease Association of America Inc., the Sickle Cell Disease Association of Canada and Sickle Cell Society, United Kingdom, is hosting an externally led patient-focused drug development (EL-PFDD) meeting.

This virtual forum will bring together those living with sickle cell disease, caregivers, healthcare professionals, researchers and other opinion leaders for an opportunity to share firsthand experiences and identify priorities for future therapeutic development with the U.S. Food and Drug Administration (FDA) and other regulatory authorities.

The meeting, “Sickle Cell Disease Voices Shaping Change,” will take place virtually on Wednesday, Jan. 27, 2027, from 11 a.m. to 3 p.m. EST (UTC-5).

“The Sickle Cell Disease Association of America Inc. and our partners are pleased to have this opportunity,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America Inc. “This forum brings together sickle cell patient and caregiver voices to ensure early involvement in drug development and encourage the FDA, other regulatory authorities, and key stakeholders to consider a broader range of clinically meaningful endpoints when evaluating therapies for sickle cell disease. This meeting will have global implications, and we want people worldwide to participate.”

Participants will have the opportunity to contribute through live testimony, panel discussions, audience polling and written comments. The perspectives collected during the meeting will be summarized in a Voice of the Patient Report, which will be submitted to the FDA and other key stakeholders to support future regulatory review, clinical trial design and therapeutic innovation.

John James, CEO of the Sickle Cell Society in the United Kingdom:

“We are delighted to be part of this initiative. This is an important opportunity for people living with sickle cell disorder, their families and caregivers to share their experiences directly with those shaping the development of future treatments. By listening to the people who understand the realities of sickle cell best, we can build a deeper understanding of its impact and help ensure that new treatments reflect the needs and priorities of the community.

“We strongly encourage people affected by sickle cell to take part in this virtual meeting and make their voices heard. By working together across our international community, we can help shape the future of sickle cell care and treatment for generations to come.”

Biba Tinga, president and executive director of the Sickle Cell Disease Association of Canada:

“Laboratory results matter, but what matters most is whether a treatment changes a life. We must ensure warrior and caregiver voices guide the development of therapies that deliver improved quality of life, longevity and hope for people living with sickle cell disease.”

To learn more about the meeting, visit sicklecelldisease.org/ELPFDD2027.

Sickle cell disease is a rare inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anaemia, jaundice, gallstones, stroke, chronic pain, organ damage and premature death. No universal cure exists.

Sickle Cell Disease Association of America Inc. advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and its more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. (sicklecelldisease.org)

The Sickle Cell Society works to improve the lives of people affected by sickle cell and to create a future where everyone living with the condition receives the care, support and opportunities they deserve. The society supports individuals and families, influences decision-makers, educates professionals, raises awareness and works with partners across health, government and communities to tackle the inequalities experienced by people living with sickle cell. The work spans information, support, advocacy, education, community engagement and policy change. (sicklecellsociety.org)

The Sickle Cell Disease Association of Canada/L’Association d’Anémie Falciforme du Canada (SCDAC/AAFC) is Canada’s national patient-led organization dedicated to improving the lives of the more than 6,500 people living with sickle cell disease, along with their families and caregivers. Through advocacy, education, research, policy leadership and community engagement, SCDAC advances equitable access to timely diagnosis, comprehensive care, innovative treatments and improved health outcomes across Canada. As Canada’s national voice for the sickle cell community, SCDAC is committed to ensuring that every person living with sickle cell disease has the opportunity to live a longer, healthier and more equitable life. (sicklecelldiseasecanada.com)

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