This week’s blog was written by our Projects Officer, Sophie.
Sophie joined the team back in June, in this blog she shares how she has found the first two months working at Beacon.
Sophie’s role at Beacon involves supporting the delivery of our patient group training and community building projects, with a particular focus on our online activities.
This month marks my two-month anniversary of working at Beacon, and what a two months it’s been! The time has simultaneously gone by so fast, but I also can’t believe it hasn’t been longer.
Before working in this sector, I didn’t even realise that the diseases my aunt and one of my closest friends live with, and therefore I know relatively well, are classified as rare!
Yet, within my first month, I had already planned and delivered my first RareChat on genetic diagnostics, sent out countless emails to potential speakers for the London Showcase (do come along!) and enlightened the team with a wide array of animal facts, from how frogs swallow to the rabbit fence dividing Australia.
However, what’s been really amazing is the welcome I’ve received into the rare disease community. Every person I’ve talked to about my new role at Beacon has been so complimentary about the organisation and the community that it supports. And they weren’t joking!
When I applied, I was intrigued by the work that Beacon does, using my administrative and comms skills and my science background to help more than just one patient at a time, as I’d been trained to do as a vet. I was, and still am, impressed that Beacon works with empathy, community and feeling, rather than the cold, hard science I had always experienced at university.
What I didn’t expect was how truly broad and therefore amazing the community is. Every single person’s experience and reason for being here is so different. I’m excited to be a part of the future vision of Beacon, analysing our impact and planning workshops based on your feedback as to what you need.
It has been an honour to get to know some of you on your mentoring programme journeys and to connect with others of you as potential speakers for the London Rare Disease Showcase 2023.
I can’t wait to meet even more of you at these and other events in the coming months as I become more and more settled into my role.
Through joining this remarkable community, my eyes have truly and irreversibly been opened to the fact that 1 in 17 people lives with a rare disease, making it likely that everyone knows at least one person affected, just look at my personal experience.
This highlights why the work Beacon does is so important, and the fact that the wider community deserve to be recognised and listened to. I’m honoured to be able to be even a small part of this and am excited to be pushing forward to ensure that no one is left to face their rare journey alone.
Thank you to Sophie for sharing your first two months with us, we hope you enjoyed hearing about what Sophie has been getting up to in her new role!