FSHD Clinical Trial Research Network

Home
United States
Westwood, KS
FSHD Clinical Trial Research Network

The FSHD CTRN is a consortium of fifteen academic research centers with expertise in FSHD clinical r

03/09/2026

02/26/2026

https://musculardystrophynews.com/columns/dreaming-solutions-olympic-sized-challenges-fshd/

After following the Olympics, columnist Robin Stemple envisions a future with new treatments and even a cure for FSHD.

11/10/2025

https://medicaldialogues.in/neurology-neurosurgery/news/study-shows-hormone-combination-improved-strength-and-function-in-fshd-patients-157802

New research has demonstrated that a combined regimen of growth hormone and testosterone is safe, well-tolerated, and is associated with meaningful improvements in muscle mass, strength, and...

08/28/2025

https://musculardystrophynews.com/columns/going-it-alone-harder-as-fshd-progresses/

02/07/2025

https://www.everythinglubbock.com/news/local-news/west-texas-native-overcomes-muscular-dystrophy-to-pursue-paralympic-dreams/

Johnny Quintana’s life changed at the age of 19 when he was diagnosed with a rare form of muscular dystrophy called Facioscapulohumeral muscular dystrophy (FSHD).

01/17/2025

Have you checked out the FSHD Society's Better Life FSHD? They have developed an online portal to help you manage and understand your FSHD.

Check it out here:

https://www.fshdsociety.org/betterlife-fshd/

01/08/2025

The FSHD CTRN has Expanded! For more information on studies you may qualify, visit our website:

https://www.kumc.edu/fshd-clinical-trial-research-network.html

11/01/2024

Hello Everyone! Avidity is trying for an accelerated approval path with their Biomarker Cohort in the Fortitude Trial!

Biomarker cohort for delpacibart braxlosiran (del-brax), the first potential therapy to target DUX4, is measuring changes in DUX4 regulated biomarkers; del-brax 2 mg/kg will be administered every six weeks

10/29/2024

Great news! The University of Hong Kong has joined the FSHD CTRN!

10/24/2024

Here's a post on Bill Moss and his daughter, Natalie Cooney on their work at FSHD Global.

The father-daughter duo spearheading a new future for muscular dystrophy diseases through the FSHD Global Research Foundation - FSHD Global

Address

Westwood, KS

Website

http://www.kumc.edu/fshd.html

Alerts

Be the first to know and let us send you an email when FSHD Clinical Trial Research Network posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Want your practice to be the top-listed Clinic in Westwood?