My name is Ellie and I have really enjoyed volunteering at Beacon while on my Industrial Placement year in Cambridge.
I’m currently studying Biochemistry at Imperial College London and hope to complete a PhD in the future!
Working with Beacon has been an amazing opportunity for me to learn more about a topic I’m passionate about, whilst also helping others.
Non-genetic rare diseases are a topic I find particularly fascinating, and I have been fortunate to be able to develop my knowledge through researching this guide and through my placement year, where I have learnt more about rare kidney diseases.
How did you hear about Beacon?
My Dad was doing some work with Andy Milligan (Beacon Trustee) and mentioned that I was moving to Cambridge to start my placement year in September 2024. Andy told my Dad about Beacon and my Dad sent me some links to the website as he thought I might be interested.
Why did you choose to volunteer with Beacon?
I study Biochemistry at Imperial College London and I have always been interested in learning more about different diseases.
Additionally, as someone who suffers from autoimmune disease, I understand how important it is as a patient to feel that you are understood and well represented in healthcare.
I wanted to volunteer with Beacon to help others and myself learn more about rare diseases.
What has been the highlight of volunteering with us?
The highlights of my year have been attending the 2024 and 2025 Rare Disease Showcases in Cambridge.
The lightning talks were always really interesting, and I met and connected with so many inspiring people. It was also great to meet up and chat with the Beacon team in person.
What have you learnt about rare diseases and rare disease patient groups?
Through writing my guide to non-genetic rare diseases for the Resources Hub I have learnt a huge amount about a range of non-genetic rare diseases and how they are diagnosed and treated.
As someone who enjoys coding, I was particularly interested in learning more about how AI and machine learning can improve the diagnosis and treatment of rare diseases.
Before volunteering with Beacon, I was also unaware of the huge role that rare disease patient groups have in supporting both patients and healthcare practitioners.
What advice would you give to someone considering volunteering with Beacon?
I would 100% recommend volunteering with Beacon and I would suggest getting involved in as many ways as possible. I’ve met so many amazing people this year through attending the Showcases and a Kidney Research UK symposium.
The experience has been so rewarding and I have enjoyed every minute of it.
Thank you for reading!
A big thank you to Ellie for volunteering with us and sharing her experience.
Are you interested in volunteering too? Find out more!
