Facioscapulohumeral muscular dystrophy (FSHD) is a rare, genetic condition, which causes muscles to weaken and waste over time. The name FSHD reflects the muscles most often affected: the facial muscles (facio), shoulder girdles (scapulo) and upper arms (humeral). There are currently no treatments to cure FSHD. Current treatment options aim to slow the progression of the disease or enhance the patient's quality of life, such as physical therapy, pain management and surgery. Developing new treatments in rare diseases is challenging. There are small numbers of patients, with different genetic diagnoses and presenting with a variety of differing symptoms. It brings significant value if the voice of the patient is included in trial design and recruitment, as they have a unique understanding of the preferences and limitations of their patient communities. There is a growing interest from several pharmaceutical companies to run clinical trials in FSHD across Europe. This study aimed to understand the FSHD community’s perspective, so that when clinical trials are developed, they are designed and organized in a way to maximize patient involvement and participation. The study was commissioned by FSHD Europe who represent patient organisations across Europe, and carried out by the John Walton Muscular Dystrophy Research Centre at Newcastle University and the Newcastle upon Tyne Hospitals NHS Foundation Trust.