A Survey for Rare Disease Patients and Caregivers

By February 27, 2023March 29th, 2023No Comments
Take the Rare Disease Diversity Survey

Your voice matters! The National Organization for Rare Disorders and the Rare Disease Diversity Coalition created a national survey for Rare Disease patients and caregivers. The survey focuses on people of color and other underrepresented communities.

Since scleroderma is one of over 7,000 diseases identified as rare, your answers are an important part of the big picture. You can help them better understand what unique experiences you have in accessing and affording health care. Learn more:

As a member of the Rare Disease Diversity Coalition, we at the Scleroderma Research Foundation are proud to collaborate with other rare disease organizations, because being rare does not mean being alone.