Lay summary
Ehlers-Danlos syndrome (EDS) is a connective tissue disorder characterised by joint hypermobility, chronic pain, and fatigue. Gastrointestinal symptoms are very common in EDS, which have a profound impact on wellbeing and often cause people to follow restrictive diets. Many people with EDS are not supported by a dietitian/nutritionist to make these dietary changes, which can lead to disordered eating behaviours and deficiencies that exacerbate the physical symptoms of EDS. Even worse, there are no guidelines specific to the unique pathophysiology of gastrointestinal symptoms in EDS. In our first step towards dietary guideline development, we will hold focus groups to understand perspectives and priorities for future research from the EDS community and clinicians involved in their care, which will culminate in forming a ‘community of practice’. These relationship-building activities are a crucial foundation to ensure that our research is responsive to the needs and aspirations of those who will use it.