Community Advocacy
Sickle Cell Foundation of MN (aka SickleCellMN) is a grassroots community-based patient advocacy organization.
Systemic inequities are everywhere! We need EVERYONE’s voice to make sustainable changes!
We are committed to advocating on behalf of individuals living with or impacted by sickle cell disease and sickle cell trait as well as those who skillfully care for members of the sickle cell community! Legislative advocacy and incorporating the SCD voice into both policy and practice, requires all of us! We cannot maximize our advocacy efforts without YOUR VOICE!
Join us as we continue to raise our voice for sickle cell warriors in Minnesota and worldwide.
Changing policies is how you change systems and changing the system can dramatically change the outcomes!
~ Rae Blaylark, President and CEO at SickleCellMN
Sickle Cell Foundation of MN proudly partners with Sick Cells, SCDAA, and Sickle Cell Community Consortium in our efforts to bring legislative education and advocacy toolkits to the sickle cell community.
Rare Disease Advocacy
Individually rare. Collectively Common.
More than 10,000 rare diseases have been identified globally, and sickle cell disease is one of them!
350 M+ people across the globe have a rare disease
>80% of rare diseases are caused by faulty genes
7.74 Million+ people (as of 2021) worldwide have sickle cell disease
In 2000, 5.46 million people had the disease, a 40% increase in 20 years!
1 in 10 individuals are affected by a rare disease
~50% of those affected with a rare disease are children
Join us as we join hands with our local and national Rare Disease Community to celebrate Rare Disease Week across the Country!
Join other advocates, experts, and policymakers to discuss critical issues surrounding sickle cell disease. Get ready to engage in meaningful conversations, share innovative ideas, and work towards improving the lives of individuals and families affected by sickle cell disease. Mark your calendars and be a part of this important event to make a real difference in the fight against sickle cell disease.
2024 Rare Disease Day (Official Video)
- Tuesday, October 1 - Sunday, December 15, 2024
- 8:00 AM - 09:00 AM
2024 Holiday Helpers Season Kick-off
FY2024-2025 Legislative Advocacy Resources
Meeting with legislators? Don’t go empty-handed!
Bring the 2024/5 Federal Legislative Requests, ASH SCD Comprehensive Care Act Requests, and the SCD Fact Sheet along with you and help us increase our efforts to advocate for FY24 appropriations on the Federal level!
2023 National SCD Policy Forum
Day 1
In March 2023, the National SCD Policy Forum brought together sickle cell advocates from across the country for a two-day federal advocacy event. This tri-collaborative event was hosted by Sick Cells, the Sickle Cell Disease Association of America, Inc. (SCDAA) and the Sickle Cell Community Consortium (SCCC).
Day 2
On Day Two (virtual hill day), sickle cell advocates and champions from Minnesota worked together and collaborated in our advocacy efforts, speaking with legislative representatives from the offices of:
- Sen Amy Klobuchar
- Sen Tina Smith
- Rep Ilhan Omar
- Rep Betty McCollum
In our meetings we asked our local legislators for increased funding for the HRSA SCD Treatment Demonstration and the CDC SCD Data Collection Program. We also requested that they co-sponsor the Sickle Cell Disease Comprehensive Care Act!
Local Legislative Advocacy
Sickle Cell Foundation meets with local, state and federal legislators in our efforts to improve all aspects of quantity and quality of life!
Check out our conversation with Minnesota Senator Amy Klobuchar, Dr. Hannah Lichtsinn and Rae Blaylark
