AMIS FSH

AMIS FSH is a French non-profit patient association (association loi de 1901) founded in 2002 and dedicated to combating facioscapulohumeral muscular dystrophy (FSHD), also known as Landouzy-Dejerine disease. FSHD is a rare, progressive, genetically inherited myopathy affecting the muscles. The association was originally named AMIS FSH Europe and adopted its current name in 2014. It is funded by memberships and donations and operates primarily in France while participating in European networks. The association pursues four missions: breaking the isolation of patients, informing, promoting research, and establishing networks. To break isolation, it runs a HONcode-certified website, a private online group for patients, a telephone listening service, and regular events called FSH Time and an annual weekend that bring together patients, researchers, and doctors for conferences, round tables, and technical workshops. To inform, it collects information from scientific journals and congresses and disseminates it through a quarterly newsletter, more than 30 videos of researcher conferences on its YouTube channel, blog articles, and practical guides (e.g., choosing physiotherapy, diet). To promote research, AMIS FSH launches an international call for research projects every two years; its scientific council reviews submissions and the association funds several projects, for example 140,000 € over two years, 150,000 € for five projects in 2023, and 135,000 € for five projects in 2025. It was the promoter of a clinical study in 2005 at the CHRU of Montpellier, which led to a therapeutic trial in 2010 involving 54 patients; results were published in Free Radical Biology & Medicine. To establish networks, AMIS FSH is a founding member of FSHD Europe, created in 2009 and headquartered in Baarn, the Netherlands. It also participates in rare disease events and has highlighted the difficulty of recruiting patients for clinical trials on rare diseases. Key dates include: 2002 creation as AMIS FSH Europe; 2003 first participation in an international scientific congress; 2005 launch of the clinical study at CHRU Montpellier; 2007 first contribution to funding a thesis; 2009 co-founding FSHD Europe; 2010 start of the therapeutic trial based on antioxidant supplementation; 2012 end of that trial with preliminary results announced on 28 October 2012 at the FSH weekend in Agde; 2013 photo and video exhibition "FSH, l'autre myopathie" in Paris; 2014 name change to AMIS FSH and receipt of approval from the French Ministry of Health (decree of 14 January 2014, published in the Journal officiel on 23 January 2014); 2017 creation of a scientific council; 2020 creation of the DUX foundation for children with FSHD; 2022 first edition of the Handival sports and solidarity day; 2023 funding of five research projects for 150,000 €; 2025 international call for projects with five projects funded for 135,000 €. Presidents have included Cyrus Hématy (2002–2005), Manuel Cabral (2005–2014), Daniel Mennetret (2015–2016), Pierre Laurian (2016–2019), Vincent Tronel (2019–2024), and Sylvie Jaricot (2024–present). The association reports ten partner patient associations and 1,800 "friends" on its Facebook page.

AMIS FSH was created in 2002 as AMIS FSH Europe, a French association under the law of 1901, dedicated to fighting facioscapulohumeral muscular dystrophy (FSHD), a rare, progressive, genetically inherited myopathy also known as Landouzy-Dejerine disease. Its founding missions were to break the isolation of patients, inform, promote research, and establish networks. In 2003 the association participated for the first time in an international scientific congress. In 2005 it launched a clinical study at the CHRU of Montpellier, based on muscle and blood samples from volunteer members; AMIS FSH Europe was the promoter of this study. In 2007 it made its first contribution to funding a thesis. In 2009 it co-founded FSHD Europe, an umbrella organization for FSHD associations, headquartered in Baarn, the Netherlands, and presided over by Kees van der Graaf, former president of Unilever Europe. In 2010 a therapeutic trial based on antioxidant supplementation began, co-financed by AMIS FSH, involving 54 patients at the Physiology and Experimental Medicine of Heart and Muscles laboratory at the CHRU of Montpellier. The trial ended in 2012, and preliminary results were announced on 28 October 2012 during the FSH weekend in Agde; results were published in Free Radical Biology & Medicine. In 2013 the association organized a photo and video exhibition titled "FSH, l'autre myopathie" in Paris. In 2014 the association changed its name from AMIS FSH Europe to AMIS FSH and received approval from the French Ministry of Health (decree of 14 January 2014, published in the Journal officiel on 23 January 2014). In 2017 it established a scientific council. In 2020 it created the DUX foundation for children with FSHD. In 2022 it held the first edition of the Handival sports and solidarity day in Aix-les-Bains. In 2023 it funded five research projects for a total of 150,000 €. In 2025 it launched an international call for projects and funded five projects for 135,000 €. The association is funded by memberships and donations. It has engaged in fundraising activities such as a runner participating in the humanitarian race La Sénégazelle in February 2012, a crowdfunding operation in November 2012 for a traveling photo exhibition with Agence Look at sciences, and since 2022 the annual Handival day. It reports ten partner patient associations and 1,800 "friends" on its Facebook page. Its presidents have included Cyrus Hématy (2002–2005), Manuel Cabral (2005–2014), Daniel Mennetret (2015–2016), Pierre Laurian (2016–2019), Vincent Tronel (2019–2024), and Sylvie Jaricot (2024–present).

• 2025

  International call for projects; five projects funded for 135,000 €

• 2023

  Funding of five research projects for 150,000 €

• 2022

  First edition of the Handival sports and solidarity day

• 2020

  Creation of the DUX foundation for children with FSHD

• 2017

  Creation of a scientific council

• 2014

  Name change from AMIS FSH Europe to AMIS FSH; receives approval from Ministry of Health (decree of 14 January 2014)

• 2013

  Photo and video exhibition 'FSH, l'autre myopathie' in Paris

• 2012

  End of therapeutic trial; preliminary results announced on 28 October 2012 at FSH weekend in Agde

• 2010

  Start of therapeutic trial based on antioxidant supplementation, co-financed by AMIS FSH

• 2009

  Co-founding of FSHD Europe

• 2007

  First contribution to funding a thesis

• 2005

  Launch of clinical study at CHRU of Montpellier; AMIS FSH Europe is promoter

• 2003

  First participation in an international scientific congress

• 2002

  Creation of the association AMIS FSH Europe

Patient-led non-profit association focused on FSHD research funding, patient support, and information.

• 2022Handival
• 2012La Sénégazelle
• 2012Crowdfunding for traveling photo exhibition

1. 1AMIS FSHfr.wikipedia.org
2. 2AMIS FSHwikidata.org