Today is the last day our Executive Director, Flóra Raffai, is spending at Findacure. In this week’s blog, we asked her to reflect on her time at Findacure.

What are your future plans?
My immediate plans are to take a holiday in Iceland; exploring geysers, glaciers, lava caves, and relaxing at the famous Blue Lagoon spa. After that, I will be taking over as CEO at the wonderful Cambridge charity Cam Sight, which has been supporting local people living with visual impairment and blindness for over a hundred years. I am looking forward to leading the team there and contributing to its long established legacy. I would love to hear from any patient groups working with people affected by visual impairment on how we could work together in the future.

How has Findacure changed whilst you’ve been here?
Findacure has changed significantly over the past four years. When I started as the first member of staff in 2013, Findacure had a board of trustees, advisory board, and a website. We had not yet run a single workshop or scientific conference. It has since grown into a flourishing organisation, supporting hundreds of patient advocates in the UK and beyond. We have established empowerment and collaborative projects, a strong community, and an international reputation in the rare disease field. I am so honoured to have been able to contribute to this growth.

What is your favourite memory from working at Findacure?
My favourite memory has to be from the Cross Your Own Oceans project we ran back in 2015. The project aimed to bring together young people living with rare diseases to build their self-esteem and confidence through going on an adventure in London. Our group decided their adventure was a day out in London visiting the London Eye and Aquarium, which they found to be challenging as all of our group used wheelchairs. The day had an aquatic theme, given the aquarium visit and the inspirational talk we listened to from Elin Haf Davies, so everyone in the group wore little white sailor hats. This was both for the theme and also so everyone could be identifiable in the busy crowds of London. While the whole day was excellent (and included my first ever trip on the London Eye), my favourite moment was designing our hats over lunch and getting far too into it for an adult. I still have it to this day – although I have yet to find an opportunity to wear it again.

What’s been your greatest/proudest achievement at Findacure?
One of my proudest achievements was being shortlisted for the RARE Champion of Hope Awards under the Collaborations in Advocacy category. It was a great honour to have Findacure’s efforts in building the rare disease patient advocacy community recognised internationally. Alongside that, I am filled with pride every time I have a patient advocate come up to me at events to tell me the impact our work has had on their life and ability to support other people affected by rare diseases.

What will you miss the most?
I will miss the Findacure community the most. It has been incredible to get to know so many people advocating for rare diseases; their stories have been inspirational and motivated me every day. There are a few people I met at the very first Findacure workshop who have continued to be involved over the years and who I have gotten to know very well. I will miss seeing them at events and hearing updates on all they have achieved. Perhaps most of all, I will miss my team at Findacure. They are a joy to work with and I have countless happy memories with our weekly office drawing competition, road trips to our events, and team building outings.

Our Head of Research Rick Thompson is taking over as CEO of Findacure, please email him on rick@findacure.org.uk if you have any queries. If you would like to stay in touch with Flóra, please email her on her new email flora@camsight.org.uk.