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ENSURING NO ONE HAS TO FACE FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY(FSHD) ALONE
The FSHD Society is here to empower patients while accelerating progress toward treatments and a cure. The FSHD community is strong and we’ll be even stronger with you in it. Together we can ensure no one on this journey travels alone. Together we will catalyze a global community to shorten the drug development timeline and get therapies to patients by 2025. Our biennial FSHD Connect Conference is now FSHD CONNECT CLASSROOM,a
world-class, virtual education conference on June 27. The VOICE OF THE PATIENT FORUM is our community’s testimony before the FDA. Participate via livestream on June 29. __ Attend FSHD Connect Classroom __ Join the Voice of the Patient Forum* JOIN US
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EDUCATE YOURSELF
Facioscapulohumeral Muscular Dystrophy is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and related to their FSHD.LEARN MORE __
ADVANCE RESEARCH
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery. HELP ADVANCE RESEARCH __BUILD COMMUNITY
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone. FIND YOUR LOCAL CHAPTER __HELP OTHERS
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by FSH Muscular Dystrophy (FSHD). SEE HOW YOU CAN HELP __WHO WE ARE
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).Get Involved
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We're In This Together WE'RE IN THIS TOGETHER... During this time of uncertainty, we want you to know you are very much in our thoughts. Many of you already feel isolated. Now, because of the restrictions in place because of COVID-19it is even
harder to get out or for others to visit. We care about what’s happening and its effects on our families. We are doing everything we can to help and strengthen the bonds of community. Together, we will get through this turbulent time. __ Learn More & Register for Camp!LATEST BLOG POSTS
MEMBER OF THE TEAM
May 4, 2020 by jkinoshita Getting involved in research is about so much more than helping yourself by Jim Albert, Eldersburg, Maryland Patients who are new to research may be trying to decide if clinical studies are something in which they want to participate. They might wonder, Am I a good fit? Will this study benefit me? I hope this…Read More...
DYNE RAMPS UP ITS FSHD PROGRAM May 20, 2020 by jkinoshita Dyne Therapeutics, a Waltham, Massachusetts, biopharmaceutical company, announced yesterday that it is accelerating its FSHD therapy development program. Here is their press release: Dyne to evaluate therapies targeting genetic cause of FSHD under agreement with international research organization UMONS Leading…Read More...
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UPCOMING EVENTS
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FSHD SOCIETY RADIO WITH MITCH AND BILL Jun 3 @ 8:00 pm - 9:00 pmFacebook Live ,
United States + Google Map Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community....Find out more »
2020 INTERNATIONAL RESEARCH CONGRESS Jun 25 @ 10:00 am - Jun 26 @ 2:00 pmweb conference ,
Hyattsville, Maryland Thanks to the diligent efforts of our program committee, we have reconfigured this year’s FSHD International Research Congress into a two-day online conference, to take place on June 25-26. This year’s congress will feature keynote talks and research presentations not readily available anywhere else. While the congress will be virtual, there will be plenty of...Find out more »
2020 FSHD CONNECT
Jun 27 @ 10:00 am - 6:30 pm The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.Find out more »
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