Ever since I was little, I wanted to work in the Charity sector. Whilst I was at University I completed several internships with charitable organisations. I developed a real interest in health-related causes and noticed that there were disease and conditions that were overlooked and lacked funding. Believing this was an area that I could make a difference, I started searching for a job and was really excited when I saw an opening at Findacure, a charity which focuses specifically on rare diseases.
I was completely inspired by a TEDx talk by one of the Founders, Nick; I knew it was a place I really wanted to work, so you can imagine how happy I was when I got the job!
After working there for three years, I am now the Executive Director. I oversee the day-to-day running of Findacure, but being a young charity, we are still fairly small, and I end up being really hands-on, which is great.
As a charity that focuses specifically on rare diseases, our job is to empower patient communities, connect patients with the people who can help them, and drive research into these diseases and learn more about how to treat them.
Our job is to empower patient communities, connect patients with the people who can help them, and drive research into these diseases and learn more about how to treat them.
There are currently 3.5 million people in the UK who live with a rare disease. That’s about one in seventeen of us. Whilst each disease may not affect more than a few people (and to be considered rare they have to affect fewer than one in 2,000), if you consider them all together they’re not that uncommon. Yet they’re very often overlooked by doctors, researchers, drug developers, and governments.
There are between 6,000 and 8,000 rare diseases, but treatments only exist for around 400 of them. That’s a huge number of people who are going without the help they need.
In the four years since Findacure was set up, there has been a general trend towards patient empowerment, especially within rare diseases. This has largely been fuelled by the advent of social media and the voice it has given patients. Consequently, there is now a lot more conversation about rare diseases and a strong patient community is emerging.
At the moment we are trying to set up a social impact bond to fund research into repurposing existing drugs for use in rare diseases. Social impact bonds, or SIBs, are financial tools that allow private investors to fund interventions that will improve social outcomes and result in public savings. It’s a very big project for us, and if we succeed in organising it, ours will be the UK’s first national healthcare SIB. The opportunities for rare diseases are huge: it is much cheaper and much easier to repurpose a drug than to develop one from scratch, and a SIB would allow us to fund investigations into many pre-existing drugs to see if they could help our patients. It’s a very exciting time for the whole rare disease community.
I really love my job and the people I meet are so inspiring. There are times when it is very difficult and it can be very emotionally demanding. We often hear stories from people who are doing wonderful things but have had to put up with so much tragedy, and there have been times when I’ve got home from work and had a cry. To be honest, that can actually be very motivating, and I’m so proud of the patients that I meet. It’s amazing that you can walk past people in the street without realising just how inspirational they are.