Community Advocacy
Systemic inequities are everywhere! We need EVERYONE’s voice to make sustainable changes!
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 (aka SickleCellMN) is a grassroots community-based patient advocacy organization. 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.
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 • 1 in 10 individuals are affected by a rare disease
>80% of rare diseases are caused by faulty genes • ~50% of those affected with a rare disease are children
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!
2024 Rare Disease Day (Official Video)
Rare Disease Day is an annual global event that brings attention to rare diseases and the millions of people affected by them. It is held on the last day of February, with the primary aim of raising awareness among the general public, healthcare professionals, and policy-makers. With thousands of rare diseases impacting millions of individuals around the world, it is crucial to highlight the importance of research, support, and resources for those affected. This article delves into the background of Rare Disease Day, its objectives, and the Sustainable Development Goals (SDGs) resources that it offers to those in need.
The History of Rare Disease Day
Rare Disease Day was first observed in 2008, organised by EURORDIS-Rare Diseases Europe, a non-governmental patient-driven alliance representing 929 rare disease patient organisations in 73 countries. The main objective of this initiative was to raise awareness about rare diseases, emphasise the need for research, and call for better healthcare policies to support patients and their families.
The Global Impact
Since its inception, Rare Disease Day has seen a significant increase in events and campaigns across the globe. The initiative has inspired more than 100 countries to join in and raise awareness, with countless patient organisations, medical professionals, and research institutions taking part in various activities to highlight the challenges faced by those living with rare diseases.
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.
Mar 5, 2024: MN Rare Disease Lobby Day at the MN State Capitol Hill (in partnership with MN Rare Disease Advisory Council & University of MN Students for Rare
Mar 7, 2024: Minnesota Rare Disease Day (McNamara Center, University of MN)
Rare Disease Day
2024 Rare Disease Day (Official Video)
Rare Disease Day is an annual global event that brings attention to rare diseases and the millions of people affected by them. It is held on the last day of February, with the primary aim of raising awareness among the general public, healthcare professionals, and policy-makers. With thousands of rare diseases impacting millions of individuals around the world, it is crucial to highlight the importance of research, support, and resources for those affected. This article delves into the background of Rare Disease Day, its objectives, and the Sustainable Development Goals (SDGs) resources that it offers to those in need.
The History of Rare Disease Day
Rare Disease Day was first observed in 2008, organised by EURORDIS-Rare Diseases Europe, a non-governmental patient-driven alliance representing 929 rare disease patient organisations in 73 countries. The main objective of this initiative was to raise awareness about rare diseases, emphasise the need for research, and call for better healthcare policies to support patients and their families.
The Global Impact
Since its inception, Rare Disease Day has seen a significant increase in events and campaigns across the globe. The initiative has inspired more than 100 countries to join in and raise awareness, with countless patient organisations, medical professionals, and research institutions taking part in various activities to highlight the challenges faced by those living with rare diseases.
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.
Mar 5, 2024: MN Rare Disease Lobby Day at the MN State Capitol Hill (in partnership with MN Rare Disease Advisory Council & University of MN Students for Rare
Mar 7, 2024: Minnesota Rare Disease Day (McNamara Center, University of MN)
National SCD Policy Forum
March 2025
(Dates to be announced in early 2025)
This forum brings together policy makers, sickle cell warriors, warrior caregivers, community leaders, and other advocates from around the country for a 2-day federal advocacy event!
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.
Day One features educational sessions on federal advocacy and policies related to sickle cell disease and an opportunity to practice your ‘elevator pitch’.
Day Two features the Virtual Hill Day. Advocates will have the opportunity to meet with their federal legislators and educate them about sickle cell disease issues and policy recommendations.
*Click the graphic or use this link to register
DON’T FORGET TO REGISTER!!!
*The 2024 National SCD Policy Forum is brought to you by Sick Cells, and the Sickle Cell Community Consortium (SCCC).
FY2025 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!
Celebrate Past Federal Legislative Efforts & Support for Sickle Cell Disease
Past SCD Policy Forums
View Day 1 Recording
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
The sickle cell community has historically been underrepresented
in policy and legislation for far too long!
Join our legislative strategy team in our efforts to make changes in the laws and legislative processes affecting the sickle cell community and use your voice for good!
*Knowledge of the legislative process is helpful, but not required
MN Legislative Advocacy Workgroup
More LOCAL Community Advocacy Activities & Resources
Sickle Cell Foundation of MN proudly partners with Sick Cells, SCDAA, and Sickle Cell Community Consortium to bring advocacy toolkits, legislative education and opportunities to use YOUR voice in the legislative process right here in Minnesota.
