#sayscleroderma

Why #SayScleroderma?

Because not enough people know what scleroderma is or does.

Because lack of awareness causes delays in scleroderma treatments and diagnoses.

Because scleroderma must END.

 

Launched by the SRF, #SayScleroderma is a collaborative movement dedicated to making this disease known. Focused on Scleroderma Awareness Month in June, this campaign highlights lived experiences, scleroderma facts, and ways you can make a difference. But when June ends, spreading awareness doesn’t need to stop. Let’s continue to #SayScleroderma, until we one day find a cure.

How You Can #SayScleroderma

Want to get involved? Here are some ways to make your voice heard and resources to support your efforts.

📹 Share Your Story: Post a video on social media saying “scleroderma” and why awareness is important to you. Check out our social media toolkit for more ideas!

💬 Start Conversations: Talk to your friends, family, and colleagues about scleroderma. Every conversation counts.

👤 Add a Profile Frame: Show your support proudly by updating your social media profile picture with our special #SayScleroderma profile frame.

📣 Spread the Word: Share our #SayScleroderma social media posts and tag us (@srfcure) to help us reach even more people.

We want to know how you’re participating! Send us an email at info@srfcure.org and let us know how you’ve made an impact. You can also give us a call at 800.441.CURE (2873).

Download the full #SayScleroderma Social Media Toolkit

Meet The People

People who live with scleroderma share their experiences.

Kate

Diagnosed in 2016

“Most people assume because I suffer from this disease, I’m fragile. I’m not.”

Read Kate's Story

Jamie

Diagnosed in 2015

“I do not want future generations to have this bombshell diagnosis dropped on them: ‘You have scleroderma’ and have no clue what that means for them.”

Read Jamie's Story

Chip

Diagnosed in 1991

“I truly believe I am still here to help others in any way possible with this awful disease.”

Read Chip's Story

Help Find a Cure for Scleroderma

Take making a difference to the next level by supporting the most promising scleroderma research.

Ways To Give

Join The Community

Connect with us and others on social media.

LIVING WITH SCLERODERMA

Join the 2025 SRF Patient Forum

“Collaborating For a Cure” is a FREE online patient forum for people living with scleroderma and those who care about them.

Register Now