Why #SayScleroderma?

#SayScleroderma because not enough people know what scleroderma is or does.
#SayScleroderma because lack of awareness causes delays in scleroderma treatments and diagnoses.

This is why we launched #SayScleroderma for Scleroderma Awareness Month. Throughout the month of June, we share from community members using the #SayScleroderma hashtag on our social media, educational content about scleroderma and current research, and various ways you can make a difference by using your voice and influence. Even when Scleroderma Awareness Month ends, spreading awareness doesn’t need to stop. Let’s continue to #SayScleroderma, until we one day find a cure.


Meet The People

People who live with scleroderma share their experiences.


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


Diagnosed in 2016

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

Read Kate's Story


Diagnosed in 2006

“I aim to inspire people living with the condition to share their strengths and live their life to the fullest.”

Read Farah's Story


Diagnosed in 1998

“Scleroderma has changed my life for the better and the worse simultaneously.”

Read Liz's Story


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

Sophie Anne

Diagnosed in 2019

“I am still young and I really want a cure to be found.”

Read Sophie Anne's Story


Diagnosed in 2019

“People just aren’t aware of scleroderma. That’s why I’m very willing to tell my story.”

Read Michael's Story


Diagnosed in 2019

“To me the word scleroderma means fight like hell. Any meaning, latin or otherwise, just doesn’t matter.”

Read Ile's Story

Spread Scleroderma Awareness with #SayScleroderma

Post a video of you saying the word “scleroderma” and what it means to you on social media, talk to someone in your life about this disease, or share one of our #SayScleroderma posts. Tag us (@srfcure on Facebook, Instagram, Twitter, and Scleroderma Research Foundation on LinkedIn) so that we can amplify your voice if possible! Or, 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 #SayScleroderma Social Media Toolkit

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.


Register Now for the SRF Patient Forum 2024

Sign up now for “Collaborating For a Cure,” an online patient forum for people living with scleroderma and those who care about them.

Register Now