The secret to making a project work? Putting people for whom it was created at the center.

The collaboration between UILDM and FSHD Society (a U.S. association representing the world's largest network of people with facio-scapulohumeral dystrophy) was born with this spirit.

FSHD Society - part of the World FSHD Alliance - was founded in 1991 by two patients, Daniel Perez and Steve Jacobsen, around a kitchen table. Today it consists of dozens of volunteer-led sections in the United States and Canada, and has affiliates around the world.

The main objectives that FSHD Society wants to achieve are:

-  Finding a cure for the disease

- Building research-enhancing structures

- Improving patient care at national level

- Accelerating the development of therapeutic treatments

 

FHSD Society is a point of reference for thousands of people, both patients and researchers, which constantly updates its community and aims to make it more aware.

The opportunity to create a link between UILDM and FSHD Society became possible through the project EpiThe4FSHD. Within the project, UILDM has the role of taking care of communication and promotion of project developments and is responsible for raising awareness of the disease by involving the patient community.

The collaboration between the two associations involves the selection of content created by FHSD Society that can be translated into Italian and disseminated through UILDM’s communication channels.

The added value of this initiative is represented those who will select the content. In fact, it will be the members of UILDM's FSHD group who will choose the articles of greatest interest to be included on the website. As we can see from this initiative, UILDM's defining characteristic is its ability to put people at the center of its actions.

An opportunity to grow to improve UILDM’s communication skills, and let more and more people know about UILDM’s work and that of its partners.

To stay up to date on FSHD Society activities, you can fill out this form and join the community!

The form is also accessible from the QR Code below.