We’re so excited to introduce Maddie our new Senior Patient and Scientific Engagement Officer, who joined the Beacon team this November.
Get to know one of the newest members of our team and email her at maddie@rarebeacon.org to say hello.
Welcome to the rare family, Maddie!
What were you doing before you joined Beacon?
Before joining Beacon, I was working in the Involvement Team at Cystic Fibrosis Trust.
Within this role, I worked with families affected by CF to ensure that CF research is meeting the wants and needs of the community.
I then took a quick break from my career to do some travelling in Australia. I’m now back from my travels and really excited to continue working with the rare community with Beacon!
Why did you choose to join the Beacon team?
Firstly, I think the work Beacon does in bringing together the rare community is really important.
There is so much power in community – helping people to feel less isolated and supported through the challenges they may be facing.
I also love working with the rare disease community, hearing everyone’s stories and advocating for the community voice in the research space.
I think that building connections between patients and researchers is key to bringing about research that meets the wants and needs of the patient community.
What do you want to achieve most at Beacon?
I really want research development to be a collaboration between researchers and the patient community.
The patient community knows what matters to them best – they are experts in their condition and their lived experience.
What are your hobbies outside of work?
I recently tried lino printing with some friends which I really enjoyed. I also love getting out in nature for long walks with friends or going for a run.
What’s your favourite book/film/TV show and why?
And that’s a wrap!
We hope you enjoyed getting to know a little more about one of our newest Beaconites, Maddie.
Remember to email her to say hello and join us in welcoming Maddie to the rare family!
