Inclusivity and equity

At the FSHD Society, inclusivity is part of our organizational DNA. We stand firmly against racism and all forms of discrimination as we fight for the lives and well-being of every individual and family around the world affected by FSHD.

Every patient’s voice is essential to our mission of helping people lead full lives while accelerating the development of treatments and a cure.

Given our values, we have been concerned that African Americans, LGBTQ, and other minority communities are under-represented in health care. We remain sensitive to circumstances in the African American community and we stand in solidarity with dismantling systemic racism, inequitable treatment, socioeconomic inequality, and bias in all forms. We believe this under-representation has critical repercussions for people’s quality of life, health care access where individuals feel comfortable seeking support, and accessibility to current and future research.

The Society welcomes everyone. We invite you to share your stories. We are committed in our efforts to break down obstacles that are preventing individuals from being empowered and engaged members of the FSHD community.  We remain and strive to be passionate advocates in the pursuit of this goal.