A joint event by FSHD JAPAN and the “FSHD Open Chat.” We’ll be meeting face-to-face and interacting with everyone we usually connect with on the other side of the screen. Time: Sunday, May 3, 2026; Doors open at 12:30 PM, 1:00 PM – 4:50 PM Location: AP Tokyo Marunouchi, Room F (Nippon Life Marunouchi Garden Tower, 3rd Floor) Special Guest: Irene González Álvarez (FSHD Spain🇪🇸) On-site Participation Fee: 1,000 yen How to Register: Via the FSHD Japan Membership Kintone App *

U.S. biopharmaceutical company Sarepta has announced preliminary trial results for “SRP-1001,” a potential treatment for FSHD1. The drug is designed to inhibit DUX4, a protein implicated in the cause of FSHD, and has so far shown promising results regarding muscle delivery and safety. However, further trials are needed to confirm its actual efficacy. Please click here for more details. https://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-announces-

＼Everyone, Come Join Us for the Patient Exchange Event!🙌／ To commemorate Rare Disease Day this year, we’re hosting an online patient exchange event! Saturday, February 28, 2026, 3:00 PM – 5:00 PM Let’s all bring topics we’d like to discuss!✊ ↓Here’s a look at the program↓ ・Conversation starters (bring your own topics) ・Q&A session with researchers ・Patient networking time Anyone affected by FSHD—including patients, family members, and supporters—is welcome to join. If you’d

The clinical trial for “AOC 1020” (commonly known as del-brax), an FSHD treatment currently under development by Avidity Biosciences, has been officially approved for conduct in Japan. For detailed clinical trial information, please click here. https://mdcst.jp/ct/ctinfo/?fbclid=IwdGRleAOc0iRleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEecg4gW0vI4jk_ZzmA7oLreM -LMVA1vcHnNB2OvXaiu7F9SDfsNO_YCXRV234_aem_CBx9w1vXxRo3TUtHsx6uQQ#fshd

Muscular Dystrophy Medical Research Society Academic Conference was held in Matsumoto City, Nagano Prefecture, on October 24-25, 2025. The overview of the presentations related to FSHD is as follows. “About the FSHD (Facio-scapulo-humeral Muscular Dystrophy) Patient Association” (Ms. Kawai, FSHD Subcommittee of the Japan Muscular Dystrophy Association / FSHD JAPAN) FSHD Japan has worked to prevent isolation among patients and families by organizing regular exchange meetings a

FSHD JAPAN Newsletter Special Edition At the May 2025 Therapeutic Education Workshop, we invited leading experts from Japan and abroad to learn about the latest research, clinical care, and rehabilitation approaches for FSHD and muscular disorders. This issue summarizes those presentations for your reference. Presentation Report ① “Practical Physical Therapy for Muscular Dystrophy” Lecturer: Professor Kumi Nishizawa (Department of Physical Therapy, School of Health Sciences,

筋強直性筋ジストロフィー患者会が開催するセミナー「治験について正しく知ろう」についてお知らせです。 こちらのセミナーにはFSHDなど他の病型の患者も参加できます。 先日のニュースの通り、日本でAvidity Biosciences社（以下、アビディティ社）のFSHD治療候補...

本日は皆さんに嬉しいお知らせがあります。 米国Avidity Biosciences社（以下Avidity社）が開発を進められているdelpacibart braxlosiran (以下：デル・ブラックス)の第3フェーズの治験開始が発表されました。...

お知らせ 第7回 FSHD生活（QOL）向上委員会が開催されます。 「FSHDとカラダ」をテーマに、FSHDに関する話題、運動や栄養の話を専門の先生にお話しいただきます。現地会場では当事者同士で交流する時間もあります。 現地&オンライン開催です。 2025年5月25日（日）...

こんにちは、FSHD患者会です。 2月28日は Rare Disease Day（世界希少・難治性疾患の日） 。 FSHDの原因となる遺伝子や原因物質(DUX4)が医学の進歩によってようやく判明したのは、つい最近のことです。...

アジアオセアニア筋学会(2024年9月12日〜15日) 本筋学会にはFSHD分科会のメンバー3人が参加しました。 2日目にFSHD分科会のこれまでの様々な活動内容をまとめて紹介するポスター発表を行いました。持ち時間3分ほどでグループ内で発表内容を解説しあう時間があり、本学会...

FSHD仙台市民公開講座リポート 2024年10月6日、仙台市で開催されたFSHD（顔面肩甲上腕型筋ジストロフィー）市民公開講座は、主に東北地方の患者が集まり、盛会となりました。 専門医による最新の診断法、治療法、社会保障制度の活用法が紹介され、患者や家族の生活を支援する内...

1.Trends in drug development The World FSHD Alliance Meetng last year (October 2022) was very exciting. Most notably, Rosmapimod, which...