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HHS Cuts Threaten Lifeline for Sickle Cell Community
In April, the U.S. Department of Health and Human services eliminated the Division of Blood Disorders – the home of the Centers for Disease Control and Prevention Sickle Cell Disease Data Collection Program (SCDC). The SCDC Program is the only national program tracking data on sickle cell disease and is crucial to improving care for those living with sickle cell disease.
As part of the SCDC Program in Minnesota, MDH works closely with the Sickle Cell Foundation of Minnesota. Utilizing SCDC data, we collaborate with partners to better understand how people living with sickle cell disease use different health care services (e.g., the emergency department), and how to improve access to care.
Eliminating the federal staff that are responsible for guiding this program at the national level has put state and local efforts at risk, potentially leaving health departments without the means to support those living with sickle cell disease in our communities.
This is a critical moment to protect the programs that serve those living with sickle cell disease. Visit leading national SCD organizations Sickle Cell Disease Association of America and Sick Cells to learn more.
In 2008, the United Nations officially designated June 19th as World Sickle Cell Awareness Day.
This international awareness day is observed annually alongside Juneteenth. The goal of World Sickle Cell Day is to increase public knowledge and understanding of sickle cell disease and the challenges experienced by patients and their families/caregivers.
The Global Alliance of Sickle Cell Disease Organizations (GASCDO) recently announced this year’s theme: “Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy.” GASCDO will be hosting a 24-hour virtual sickle cell awareness event on June 19th where they will unite across time zones and boarders to amplify the voices of individuals and families affected by sickle cell disease, share inspiring stories of resilience and advocacy, discuss innovative solutions and best practices for SCD management and mobilize global support for SCD awareness, research, and policy change. Visit their website for more updates and registration details!
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Check out and subscribe to Sickle Cell Foundation of Minnesota's YouTube page where you can view Living Sickle SMART virtual education sessions on topics including:
- Curative Therapies in Sickle Cell Disease
- Priapism in Men with Sickle Cell Disease
- Kidney Health for Sickle Cell Trait Warriors
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Cheat Codes: A Sickle Cell Podcast
Sickle Cell Foundation of Minnesota's Rae Blaylark joined a recent episode of the Cheat Codes podcast where she and other Sickle Cell Disease advocates discuss the challenges and rewards of sickle cell advocacy. Tune in to the episode!
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Upcoming Trainings and Webinars
Annual Sickle Cell Disease Research and Educational Symposium and National Sickle Cell Disease Scientific Meeting
Join healthcare providers, researchers, scientists, patients and advocates for one purpose: to better the lives of Sickle Cell Warriors. Learn about innovative research, treatments, and education to change the conversation and reshape the future of sickle cell disease.
Register here for the event on June 6-8.
The Latest Advances in Precision Diagnostics, Imaging, and Lab-Based Sickle Cell Disease Monitoring
Don't miss this live webinar with expert faculty on essential lab testing for sickle cell disease. Learn the latest evidence on routine blood work, hemoglobin screening, iron overload, and key biomarkers for inflammation, coagulation, and organ damage.
Register here for webinar on June 25.
STORM TeleECHO
STORM TeleECHO will empower health care providers to develop the skills, knowledge, and confidence to manage pediatric and adult patients with sickle cell disease using evidence-based best practices.
Register here for upcoming STORM sessions.
SCD Family Fun Day
Join Sickle Cell Foundation of Minnesota and Children's MN for a family fun day at the Science Museum of Minnesota! This free event is designed for individuals and families impacted by sickle cell to come together, explore hands-on exhibits, and enjoy science in a fun and welcoming environment.
Register here for the event on August 2, 9 a.m. - 12 p.m.
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Other Resources
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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