Throughout 2025, the Fabry Education and Resilience Project brought the UK Fabry community together to share knowledge, ask questions and support one another.
The project created multiple opportunities for member engagement while providing a safe space to explore the practical and personal challenges of living with Fabry disease.
Fabry-related pain is one of the most complex and unpredictable symptoms of Fabry disease. Through community discussions, expert insights, and shared experiences, we have explored different types of pain, triggers and management strategies.
Physical activity is often one of the first challenges raised by our community. We have talked to our Fabry community about the barriers, adaptations and benefits of moving more while living with Fabry.
Gastrointestinal (GI) symptoms affect over half of people with Fabry and can include abdominal pain, diarrhoea, constipation, nausea and bloating.
Many members felt that women’s health issues deserved greater attention and shared experiences of heavy periods, painful cramps and concerns about fertility.
Understanding and communicating information about Fabry disease within families can be challenging, especially since the condition can present so differently, even among close relatives.
Talking about Fabry disease can be difficult, especially when you're trying to explain it to someone who has never heard of it. We’ve been working with our Fabry community to develop simple, supportive scripts to make these conversations easier
We invited members to share real-life scenarios where they felt they would benefit from a bit of extra support to be their own best advocate. These included making complex treatment decisions, navigating work and employment and overcoming barriers to accessibility in public spaces.
We engaged our Fabry community in a discussion about the biggest financial and social challenges they face.
We know that some topics can feel uncomfortable, emotional or even taboo. Therefore, creating space for you to ask the questions that often go unspoken, is really important.
This year’s meeting in Lisbon marked the 20th anniversary of the Fabry International Network (FIN), a time to reflect on two decades of collaboration and progress.
