Rare Disease Day

Every year, the last day of February marks Rare Disease Day! The Scleroderma Research Foundation joins the global rare disease community to shine a light on what it means to live with this complex disease that many people have never heard of. Raising awareness of scleroderma is essential; it can lead to earlier diagnoses, improved access to care, and driving research toward a cure.

Lack of Rare Disease Awareness Impacts People Living with Scleroderma

Each year for Rare Disease Day, we spotlight stories from our community that capture what it looks like to navigate this complex and unfamiliar disease. Living with a rare disease like scleroderma often means facing years of misdiagnosis, limited research, and having to advocate for yourself.

Rare Disease Day Highlights

Why Rare Disease Research Matters: Nora Shares Andy’s Story

“People who are living with a rare disease are fighting something that few people understand,” Nora R. says of her late husband Andy’s (dx 2018) battle with scleroderma. “A lot of healthcare workers have never heard of scleroderma because it is so rare. It’s an invisible illness, and people outside the community have no idea what it’s like to fight it.”

Read Their Story

Elisabeth Shares Why We Need Rare Disease Research

In this video, Elisabeth K., PhD (dx 2021) shares why she believes that funding research on rare diseases, like scleroderma, is so critical. As both a scientist and someone directly impacted by scleroderma, she lists the top three questions she has that she wants research to answer.

Behind the Mystery: Raising Awareness Through Broadcast TV

The SRF was featured on Behind the Mystery, a recurring series devoted to rare and genetic diseases on The Balancing Act on the Lifetime Network. The episode, produced for Rare Disease Awareness Month, continues to bring scleroderma and the need for research to a national audience.

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Get Involved for Rare Disease Day

Explore the resources below to learn how you can be part of it next year.

Social Media Toolkit

Help spread awareness by using the official Rare Disease Day Social Media Toolkit. This resource includes shareable graphics, messaging tips, and key hashtags to amplify your impact on social media.

Access the Toolkit

Attend a Rare Disease Day Event

Each year, organizations across the U.S. mark Rare Disease Day with events open to the public. Past events have included the FDA's Rare Disease Day meeting, where FDA leaders discuss the role of patient engagement in research initiatives, and the NIH's Rare Disease Day event, a national gathering (with virtual livestream options) highlighting research collaboration and advocacy.

Share Your Story

Your scleroderma journey could help someone else feel less alone. Sharing your experience helps start conversations and puts a face on this disease. Contact us if you'd like your story featured on our social media and blog.