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News

Home / Blog

The challenges of the new era

March 22, 2023 Pinned Post Leave a Comment

What can you do to help? When we say that we are embarking on a new era in clinical trials, what do we mean? After all, we have seen previous… Read More »

Filed Under: FSHD Research, General

About early-onset FSHD

March 21, 2023 Pinned Post Leave a Comment

Our webinar with Dr. Tina Duong remains timely and important for families with FSHD. In it, she focuses on individuals with early-onset FSHD, meaning those who develop symptoms in their… Read More »

Filed Under: FSHD Research, Health and Medicine

How postural changes lead to pain

March 1, 2023 Pinned Post Leave a Comment

“I’m focused on getting posture right and core as active as possible.” – Ulrike Uta At this month’s Feeling Fit with FSHD sessions, physiotherapist Ulrike Uta, MSc, MCSP, of the… Read More »

Filed Under: Living with FSHD, PT and Exercise

European FSHD patients speak out

February 28, 2023 Pinned Post Leave a Comment

To coincide with World Rare Disease Day FSHD Patients across Europe say what they want from clinical trials Announcement by FSHD Europe FSHD Europe is pleased to publish the Lay… Read More »

Filed Under: FSHD Research, General

Find your rope team

February 27, 2023 Pinned Post Leave a Comment

When the going gets tough, your team will hold you up by Leigh Reynolds, FSHD Society Army Command Sgt. Maj. Gretchen Evans earned the highest rank an enlisted soldier can… Read More »

Filed Under: FSHD Society News, General, Living with FSHD

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