In our WhatsApp Community, 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 took a deep dive into each scenario and shared practical, easy-to-use guides to help people feel more informed, prepared and confident in speaking up for themselves.
While these guides respond to themes raised by our community, they are designed as general information only and should not be taken as direct or personalised advice.
Self-advocacy in decisions around Fabry-specific therapy
Learn how to approach conversations about starting, continuing or stopping Fabry-specific therapy. This guide covers how to prepare for appointments, the types of questions to ask, how to monitor and record treatment impact and what to do if you don’t meet treatment criteria. It also includes tips on multidisciplinary care, second opinions and advocating for someone else.
Fabry disease and work: Employment guidance
This guide explores your rights at work under UK equality and disability law, including reasonable adjustments, flexible working and medical leave. It also provides advice on communicating your needs to employers, planning phased returns, accessing schemes like Access to Work and considering career changes or retirement. There’s also practical information on benefits, pensions and where to go for specialist advice.
Self-Advocacy in the community: Accessing public spaces
Focused on making public spaces more accessible, this guide explains how to request adjustments in leisure centres, airports, events and other busy settings. It covers schemes like the sunflower lanyard, event accessibility passes, quiet spaces, priority seating and fast-track queues. You’ll find practical scripts for speaking up, tips on planning ahead and advice on what to do if your request is refused - all framed within your rights under UK equality law.
If you would like to discuss your own circumstances, please contact our Support and Advocacy Team or use the links within the documents to access further help.
