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#SayScleroderma

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.

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.”

#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.