Understanding the True Cost of FSHD

The True Cost of FSHD survey is one of the most important research studies we’ve ever done.

It’s the first survey of its kind in the U.S., designed to uncover the hidden costs and economic burden of living with FSHD.

FSHD affects more than just health. It impacts finances, work, education, and daily life. Many costs go unnoticed or aren’t covered by insurance, and that’s what we set out to understand.

This research will help inform government agencies, insurance companies, and decision-makers about the real costs of living with FSHD. Our goal is to use this data to advocate for better coverage, fairer reimbursement decisions, and improved access to future treatments.

A huge thank you to the hundreds of families who participated in this study. Your voices are shaping the future of FSHD care and ensuring that financial challenges are recognized and addressed.

What Do We Mean by “Hidden Costs”?

People living with FSHD and their families often face extra expenses that others don’t. These can include:

Medical costs that insurance doesn’t fully cover, like co-pays, medical equipment, and non-prescription treatments.
Home and vehicle modifications, such as installing ramps, safety bars, or adapting a van for a wheelchair.
Job and education challenges, including lost work opportunities or the need for special accommodations.
Unpaid caregiving from family members who provide essential daily support.
Other financial burdens that come with managing FSHD.

What’s Next?

The survey closed in October 2022, and we are now analyzing the results. We are also gathering additional data from insurance companies to paint a full picture of the financial burden of FSHD. We presented an interactive workshop with preliminary results at the 2025 World Orphan Drug Congress (pictured right).

Stay tuned—once our findings are published, we’ll share them with the community!

Learn More

To learn more about how the survey was conducted, watch our FSHD University webinar, recorded in July 2022: