30th Annual FSHD Society International Research Congress June 15-16, 2023 Milan, Italy The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular…
FSHD University: Dr. Rita Perlingeiro on Stem Cell Research and FSHD February 23, 2023 Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute…
Feeling Fit with FSHD: Postural Changes, Part 2 February 23, 2023 Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We…
Early-Onset Parent Roundtable February 21, 2023 Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and…
FSHD University: The FORTITUDE Trial February 14, 2023 Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound…
Wellness Hour - Towards Hope February 13, 2023 This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the…
Feeling Fit With FSHD: Postural Changes February 9, 2023 Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today’s session. Postural changes…
A January 2023 news release from biopharmaceutical company Avidity Biosciences, Inc. ("Avidity") shares that the company's therapy, AOC 1020, earned Fast Track designation from the FDA for the treatment of…
Actor Max Adler is known for a variety of roles in films and TV shows such as Glee, Saugatuck Cures, and Switched at Birth. But did you know that…
As part of its 2022 webinar series, the Rare Disease Cures Accelerator Data and Analytics Platform (RDCA-DAP) hosted a webinar on August 17, 2022 titled "Addressing the Gaps in Clinical…
In a news release, biopharmaceutical company Fulcrum Therapeutics, Inc. ("Fulcrum") shared that the first patient was dosed in the Phase 3 REACH study. Within the study, researchers are evaluating…
2022 FSHD Connect June 18-19, 2022 Orlando, FL An educated, empowered, and connected community can achieve extraordinary things! Every two years, the FSHD Connect conference brings together hundreds of patients,…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
Genetic editing has the potential to address and treat a variety of genetic conditions. Recently, researchers explored gene editing as a potential therapeutic option for patients with facioscapulohumeral muscular dystrophy…
FSHD University: The Job Talk w/ Lynn Stevens May 20, 2021 Many people with FSHD have given up when it comes to work. They often believe they are unemployable and…
FSHD Society Radio May 11, 2021 On the second Tuesday of each month, Tim Hollenbeck hosts FSHD Society radio on YouTube. Dial in at 414-375-2561 to share your thoughts, or…
Ray Jordan and Cyndi Segroves were born thousands of miles away from one another; in fact, they grew up in different countries. Cyndi is from the US and Ray is…
Colette Wheeler is one of four siblings, and although each had only a 50/50 chance of inheriting the genetic mutation that leads to facioscapulohumeral muscular dystrophy (FSHD), all of them…
by Danielle Bradshaw from In The Cloud Copy Fulcrum Therapeutics, a company that focuses on clinical-stage biopharmaceuticals to improve the quality of life for patients that have rare genetic diseases,…
A team of researchers from the University of Alberta have created a possible treatment for facioscapulohumeral muscular dystrophy (FSHD). Their work has been published in the Proceedings of the National Academy…
According to a press release from the Boston Children's Hospital, a study has discovered the efficacy of CRISPR-Cas9 gene-editing technology in the treatment of facioscapulohumeral muscular dystrophy (FSHD). As…
Losmapimod is an experimental treatment for facioscapulohumeral muscular dystrophy (FSHD), and it recently received the Orphan Drug designation from the FDA. Not only did it receive this designation, but its…
A recent press release from Fulcrum Therapeutics, a Massachusetts-based biotechnology company, announced preliminary findings of the company's phase 1 clinical study of losmapimod in the treatment of facioscapulohumeral dystrophy. Losmapimod is…
The Bad News Unfortunately, it has recently been announced that an experimental treatment for facioscapulohumeral muscular dystrophy (FSHD) will not be continuing on in clinical trials. This is because the…
According to a press release from Massachusetts-based biotech company Fulcrum Therapeutics, the company has successfully secured global commercialization rights of GlaxoSmithKline-developed experimental facioscapulohumeral muscular dystrophy (FSHD) drug losmapimod. Losmapimod, an…
© Copyright Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
