Happy CLOVES Syndrome Awareness Day!
Here at CLOVES Syndrome Community, our mission is to improve the lives of those affected by CLOVES Syndrome through support, research, and education. Put another way, we strive to
🍀 Create opportunities for connection across our community,
🍀 Collaborate with scientists and industry to better understand CLOVES and develop new treatment options, and
🍀 Drive awareness of CLOVES worldwide–through campaigns like CLOVES Syndrome Awareness Day!
We envision a future where people with PROS conditions live long, full, vibrant lives, with access to excellent medical care.
We recently started a new fiscal year, and as we review all we’ve accomplished in the last twelve months one thing is crystal clear: We couldn’t have done any of it without dedicated individuals like you, who donate, volunteer, and lend us your expertise.
“Finding the CLOVES Community changed my life completely. I grew up never seeing anyone like me, not even a bit. Now I feel so seen and represented by all the different people we see here on the community. All I have to say is thank you, with all my heart!”
-Gabi
This year, we have aligned our Annual Appeal alongside our CLOVES Awareness Day campaign because spreading CLOVES awareness and highlighting CSC’s impact go hand in hand. See below for a snapshot of the impact our organization has made this year, all thanks to our community of donors, experts, and supporters.
- Forty families were directly served by CSC programs like Betsy’s Camp and the Family Assistance Program
- CSC granted approximately $20,000 to individuals and families through programs like CSC Back-to-School Bucks
- Our online reach and engagement online doubled, reaching more than 64,000 unique individuals
- We spent more than 30 hours collaborating with researchers and experts in academia and industry, helping in the development of new treatments and scientific insights.
- The CLOVES Patient Registry grew by more than 55%, getting us closer than ever to launching the first ever CLOVES Syndrome natural history study.
If you would like to join us as we continue to improve the lives of people with CLOVES and their families, please consider donating today. It’s easy to become a donor, and your gift of whatever size will be genuinely appreciated.
“We are so thankful for the CLOVES syndrome Community that helped us navigate through this very hard time. Being able to reach out and talk to other parents was one of the most helpful things. We didn’t feel alone anymore!”
-Melinda