Welcome to the Kansas City Chapter!
Thank you for visiting the Kansas City Chapter of the FSHD Society which officially launched in August 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
Join Us for Our Next Chapter Meeting on November 10th!
We will be meeting with Dr. Jeffrey Statland to discuss genetics from 3pm-5pm. More details below.
Please RSVP HERE to attend this meeting!
To contact Chapter Director Kiley Higgs directly, please email:
Would you like to get involved? Simply fill out the form below:
Upcoming Events › Kansas City Chapter Events
This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…Find out more »