FSHD Patient Organisations

Below you will find a list of all patient organizations and support groups that cover FSHD. This list deals exclusively with FSHD, while organizations that deal with all neuromuscular diseases including FSHD are listed on the following page.

Amis FSH Europe Amis FSH Europe

France

AMIS FSH Europe aims to establish and lead a European-wide community for those affected by facio-scapulohumeral.

More Info
Email
Website www.fshd-group.eu

 

Friends of FSH Research Friends of FSH Research

United States of America

There is no cure or treatment strategy for patients with FSH Muscular Dystrophy (FSHD). This debilitating disease slowly consumes skeletal muscle, robbing people of the active, healthy, and independent years of their lives. For over a decade, Friends of FSH Research (Friends) has supported research studies that have contributed to our understanding of FSHD, offering the hope of treatment to the over 500,000 people living with the disease.

Friends was started by the family and friends of Terry and Rick Colella, whose son has FSHD. The goal of the organization was to stimulate research on FSHD in the Pacific Northwest. By reaching out to investigators at the University of Washington, Seattle Children’s Hospital, and the Fred Hutchinson Cancer Research Center, we were able to provide seed monies for projects that would ultimately attract over $15 million dollars in funding.  Although there now exists an impressive number of researchers supporting FSH research, there are even more projects that need to be funded in order to accelerate the goal to develop a treatment or cure.

More Info
Email
Call 01 425-827-8954 Website www.fshfriends.org

 

FSH Europe Patients Platform

Europe

Members working group:

Kees van der Graaf (Stichting FSHD, Netherlands)
Emmanuelle Michau (Amis FSH Europe, France)
Fabiola Bertinotti (FSHD Italia Onlus, Italy)
Stuart Watt  (Muscular Dystrophy Campaign UK)

More Info

 

FSH Society FSH Society

United States of America

The FSH society is the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. They harness the power and insight of a patient-driven model, as it was founded on a promise between two research scientists with FSHD never to let the disease be forgotten or neglected.

More Info
Website www.fshsociety.org

 

FSH-MD Support Group UK FSH-MD Support Group UK

United Kingdom

The FSH-MD Support Group UK is run by members for members and exists to improve the quality of life for those who have Facio-Scapulo-Humeral Muscular Dystrophy (FSHD), their carers, families and friends. We do this by offering support and information through our website and newsletters. The support group also has a private, very active forum page on Facebook where members can ask for advice or just exchange information that might improve member's quality of life. We are a point of contact for the newly diagnosed and are able to put fellow FSHers in touch with each other. The group also runs annual themed  "Get Togethers", Information and research days and social events across the UK. We also work closely with the Muscular Dystrophy Campaign and when members join our group they automatically get free membership to the MDC.

More Info
Website fsh-group.org

 

FSHD Champions

FSHD Champions is a voluntary, informal alliance of all national and international organizations advocating for FSHD patients and funding FSHD research.

Our Mission

  • To promote communication and collaboration between FSHD researchers and FSHD research organizations/charities.
  • To have the opportunity to work together to fund research projects that are beyond the scope of the individual organizations.
  • To work together to advocate for greater FSHD research funding from organizations such as the National Institutes of Health in the United States, European Union and the Muscular Dystrophy Associations/charities worldwide.
  • To work collaboratively to promote International awareness of Facioscapulohumeral Muscular Dystrophy and the need for FSHD research funding.
  • To share expertise and best practices for the overall promotion and success of the individual FSHD research initiatives.
  • To work towards the availability of an affordable and effective treatment for FSHD; and to advocate for reimbursement of such treatments.

More Info

 

FSHD Europe FSHD Europe

Europe

FSHD Europe represents those people throughout Europe who are affected by FSHD. Their objectives are...

  • to raise awareness, understanding and knowledge of FSHD.
  • to encourage, promote and share best practice in the care, welfare, support and diagnosis for FSHD affected individuals and their families.
  • to stimulate, encourage and support more research into finding a cure for FSHD.
  • to source and raise funds for FSHD research and appropriate care and support programs.
  • to allocate and manage funds for more FSHD research, more FSHD researchers and appropriate care and support programs,
  • to work with other national and international FSHD and dystrophy organisations,and governments to achieve the objectives of FSHD Europe.

More Info
Website www.fshd-europe.INFO

 

Stichting FSHD Stichting FSHD

Netherlands

The Dutch FSHD Foundation’s goal is to stimulate, facilitate and financially support solid scientific research into the causes of FSHD, in order to find treatments and develop solutions that help improve patients’ quality of life.

Contact person - Kees van der Graaf

More Info
Website www.fshd.nl

 
 
12 Apr 2017