Why #SayScleroderma?
Because not enough people know what scleroderma is or does.
Because lack of scleroderma awareness causes delays in scleroderma diagnosis.
Because scleroderma must END.
The #SayScleroderma movement was built on a simple but powerful idea: the more people who know about this disease, the closer we get to a world without scleroderma. Launched by the SRF, this campaign is focused on uplifting the voices of those living with scleroderma, sharing out critical facts about the disease, and taking action to drive awareness and change. June may be Scleroderma Awareness Month, but our commitment doesn’t end there.
Say it loudly. Say it often. #SayScleroderma until there’s a cure.
How You Can #SayScleroderma
Want to get involved this #Scleroderma Awareness Month? Here are some ways to make your voice heard and resources to support your efforts.
Explore the Toolkit
Check out our toolkit to find graphics, ideas for social media posts, and more that you can use to ask the world to #SayScleroderma with you.
Tell Your Story
Share what living with scleroderma means to you with your friends and family, and help put a face to this disease.
Want to be featured on our website or social channels? We’d love to hear from you.
Get Your Own SayScleroderma Swag
You can now rep the cause in style — shirts, hoodies, bags, and hats with so many fun options to choose from. Rock your favorite look while helping spread the word about scleroderma everywhere you go.
*All proceeds go directly toward website and product costs. The SRF does not profit from any store sales.
Show Your Support with Our Custom Profile Photo Frame
Show the world you stand with the scleroderma community. Add our special #SayScleroderma profile frame to your photos this June and help spark conversations that matter.
Select from a range of colors and designs, and help spread awareness all month long!
Meet the People Behind the Diagnosis
Get to know people who live with scleroderma, as they share their scleroderma journeys in their own words.
Yvette
Dx in 2016.
“I always want to be someone to motivate my fellow scleroderma brothers & sisters. Having an autoimmune disease is not for the weak.”
Joseph
Dx in 2019.
“Supporting research is inseparable from amplifying patient voices—it helps pave the way so that no one has to wait as long as I did for answers.”
Monika
Dx in 2017.
“The more awareness we can bring to the disease, the more people will recognize scleroderma symptoms early and get the help they need.”
Alaina
Dx in 2013.
“Scleroderma impacts my life everyday, but I want to be able to show people that they ARE strong enough.”
Nora
With late husband Andy, dx in 2018.
“Rare disease awareness leads to early diagnosis and treatment, and is key to helping people deal with scleroderma.”
Andrew
Dx in the 1990s.
“Awareness of scleroderma is so important because you need to know how to listen to the signs in your body.”
Make a Difference with the Cure Crew
The Scleroderma Research Foundation Cure Crew is a grassroots volunteer program that raises awareness about scleroderma and the funds to support SRF’s research.
Cure Crew members around the world are united by a shared belief in the power of research to help people with scleroderma live longer, fuller lives, and lead us closer to a cure.
#SayScleroderma Collaborators
The Scleroderma Research Foundation partners with the following organizations, allowing us to make a bigger impact than any one of us could alone.
LIVING WITH SCLERODERMA
Register for the 2026 SRF Scleroderma Patient Forum
This is a FREE, virtual event for people living with scleroderma and those who care about them.
