Coaching Rare Disease Patient Group Leaders
About the Organisation
Beacon for Rare Diseases is a UK-based charity that brings together the rare disease community, with patient groups at the heart of its work. Through training and development, they help these often small and volunteer-led groups to form, grow, and strengthen their impact.
What They Needed
Leading a patient group is deeply personal work. Many leaders are patients, parents or caregivers, and take on huge responsibilities, often without formal leadership training. They’re expected to manage relationships, run organisations, and advocate for their community, all while navigating their own lived experiences.
Beacon approached me to design and deliver a coaching programme tailored to these unique challenges. The goal was to support patient group leaders to:
Build confidence and resilience
Strengthen their leadership and communication skills
Reflect on their roles and relationships in a safe, structured space.
What We Did Together
We designed a four-month coaching programme that balanced individual support with peer connection.
1. Introductory group session
We began with a group session where participants:
Explored what coaching is and how it could support them
Set personal goals for the programme
Began building connections with one another, recognising shared experiences and challenges
2. One-to-one coaching
Each participant took part in three hour-long coaching sessions. These were confidential, tailored spaces where leaders could bring the issues that mattered most to them, from managing boundaries and balancing commitments, to clarifying their vision or tackling imposter feelings.
My coaching approach was focused, flexible and responsive. I offered space to reflect, encouraged practical action, and introduced tools to help participants move forward with clarity and confidence.
3. Closing group reflection
We ended the programme with a second group session, where participants shared their learning and insights. This reflection space also helped reinforce peer relationships that could offer ongoing support beyond the formal programme.
The Impact
Participants reported increased confidence, clearer leadership goals, and a renewed sense of direction in their work. Every participant rated their overall experience 10 out of 10.
One participant shared: “Taking some much needed time out to talk in a safe and encouraging space with Flóra was such a positive experience for me! At each session she encouraged me to talk through any challenges I was facing and gave me practical advice and tools to help me both reflect and focus to ultimately realise the solutions by myself. Flóra was incredibly easy to talk to, extremely attentive and always managed to make sense of my thoughts and feelings, all the while increasing my confidence and helping me to overcome my insecurities."
The programme is now in its third year, having supported 15 patient group leaders from across the world.
Interested in Coaching Support?
If you're curious about one-to-one coaching or want to explore a tailored programme for your team or network, I’d love to hear from you. Let’s talk about what kind of support might make a difference.