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Welcome to the summer edition of our Sickle Cell Newsletter!
 World Sickle Cell Day is observed annually on June 19, alongside Juneteenth. The primary goal of World Sickle Cell Day is to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers. Join us in raising awareness and celebrating the black community!
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This month, we are honored to highlight the story of a sickle cell warrior, B. Wilson (they/them). B is an artist, educator, and Queer Black non-binary person living with sickle cell disease. B shared their powerful story of advocacy, the impact of sickle cell on their life, and the challenges of navigating healthcare as a queer, non-binary person. Read B’s story here.
*If you are a sickle cell warrior and would like an opportunity to share your story publicly, please contact admin@sicklecellmn.org
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Rae Blaylark, the founder and President of the Sickle Cell Foundation of Minnesota attended the 2026 SCDAA Federal Advocacy Day in Washington DC in May. Rae represented Minnesota as a constituent, caregiver, and a community partner, asking legislators to protect federal programs and policies that help SCD families move from diagnosis to coordinated care. To learn more, visit: Advocacy Alerts & Updates.
Pictured (left to right): Natasha Thomas (SCDAA), Antonia Perry (Sickle Cell Warriors of Wisconsin) and Rae Blaylark (Sickle Cell Foundation of Minnesota).
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DONATE BLOOD!
Blood transfusions are one of the most critical treatments for people with SCD, yet fewer than 10% of Americans donate blood. A single donation can help save multiple lives! Make a plan or schedule an appointment to donate today.
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Upcoming Trainings and Webinars
Federal Resources and Efforts to Advance Sickle Cell Disease Comprehensive Systems of Care (part 2)
When: Thursday, June 18, from 1 p.m. to 2:30 p.m. CT.
This roundtable will provide information about available resources and specific efforts across Health and Human Services, and address challenges highlighted during Roundtable 1 in achieving sickle cell disease comprehensive systems of care.
Register for Part 2 - Federal Resources and Efforts to Advance Sickle Cell Disease Comprehensive Systems of Care. Note: participation in Part 1 is not a prerequisite for attending Part 2 of the roundtable series.
World Sickle Cell Day - Closing the Survival Gap: Equity in Sickle Cell Disease
When: Thursday, Jun 18, 11 p.m. - Saturday, Jun 20, midnight CDT
Be part of a 24-hour live, on-demand virtual awareness and action event dedicated to uplifting the sickle cell community worldwide. Hosted by the Global Alliance of Sickle Cell Disease Organizations (GASCDO) and Cayenne Wellness Center, this event brings together advocates, caregivers, patients, healthcare professionals, and allies to amplify local efforts with global solidarity.
Register to virtually attend World Sickle Cell Day.
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Upcoming episode: Real Talk: Real Warriors. Real Conversations.
When: Tuesday, June 23, 6 p.m. CST
This special Pride Month episode of Real Talk: Real Guests (formerly known as Sickle Smart) is hosted
by Sickle Cell Foundation of MN’s founder Rae Blaylark. Rae will be joined by three sickle cell warriors: B. Wilson, Tristan Lee, and Andre Marcel Harris.
Register to tune in to this episode.
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Research That Heals: Partnering with Patients to Transform Sickle Cell Disease Care
When: Thursday, June 25, 8:30 a.m. – 3:50 p.m. ET and Friday June 26, 8:30 a.m. – 1:15 p.m. ET
Hosted by the National Heart, Lung, and Blood Institute and the Sickle Cell Disease Association of America, this forum aims to discuss and develop solutions to enhance care and improve the quality of life for individuals living with SCD. Participants will have the opportunity to share their experiences and insights, helping to shape future strategies for research training, education, and partnerships.
This hybrid forum is free and open to the public. Community participation is encouraged. Learn more and register for the forum.
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19th Annual Sickle Cell in Focus Conference
When: Thursday, Sept. 24 – Friday, Sept. 25
CCo-hosted by the National Heart, Lung, and Blood Institute (NHLBI) and The University of the West Indies (UWI), this year’s SCiF conference will focus on advancing global understanding and management of SCD through sessions on data harmonization and global SCD databases, transfusion complications, genetic therapies, and the role of inflammation and aging in SCD.
Learn more and register for the conference.
2026 Sickle Cell Disease Policy Forum (recordings now available)
The SCD Policy Forum was a two-day, hands-on event designed to inform sickle cell advocates on critical SCD policy priorities, train advocates on how to speak with their federal representatives to share what matters to the community, and match advocates with their federal representatives in a live Virtual Hill Day session.
STORM TeleECHO
STORM TeleECHO will empower healthcare providers to develop the skills, knowledge, and confidence to manage pediatric and adult patients with sickle cell disease using evidence-based best practices.
Register for upcoming STORM sessions.
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American Society of Hematology (ASH) Sickle Cell Disease Coalition
- The Sickle Cell Disease Coalition is composed of public health, research, and provider organizations, patient groups, faith-based organizations, federal agencies, industry representatives, and foundations with an interest in sickle cell disease.
The Sickle Cell Disease Association of America (SCDAA)
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SCDAA 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.
- SCDAA and Forma Therapeutics produced an impactful PSA that shows what SCD crises look like so more people can take action. Watch the Believe It PSA video.
National Alliance of Sickle Cell Centers (NASCC)
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NASCC’s mission is to support sickle cell disease centers in delivering high-quality comprehensive care by setting standards, promoting their adoption, identifying opportunities and resources to strengthen those centers, and advocating for access to comprehensive care to improve health outcomes, quality of life, and survival.
NMDP – Sickle Cell Connect
- Created by NMDP℠, Sickle Cell Connect is here to support sickle cell warriors on their journey by providing resources, support and treatment options including access to world-class cellular therapies.
SCDAA and MedicAlert Program
- During a sickle cell pain crisis, time is of the essence. SCDAA and MedicAlert have launched a pilot program designed to improve the emergency room experience for sickle cell warriors. Learn more about the program and how to get involved.
Social Security Disability
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