Rare diseases may be individually uncommon, but together they affect millions—yet they often remain overlooked. As students at the University of Cambridge, we’ve been inspired by the incredible work of CamRARE in uniting patients, researchers, and advocates to drive change in the rare disease space. That’s why we’re lacing up our running shoes for the Cambridge Half Marathon—to raise awareness, funds, and support for a cause close to our hearts.
In this blog, we (Athena, Ryan, and Zachary) share our motivations, our connection to rare diseases, and our hopes for a future where no patient is left behind. Read on to find out why we’re running and how you can support us!
Introductions
Athena Ham, 5th Year Medicine, University of Cambridge
- I am a medical student with an interest in paediatrics, genetics and rare diseases. I am also the Vice President of the University of Cambridge Rare Disease Society.
- Fun fact: I have learnt 6 languages.
Ryan Lin, 4th Year Engineering, University of Cambridge
- I am an engineering student with a specialisation in information and computer engineering.
- Fun fact: In 2024, I was the top buyer of filtered full cream milk from Sainsburys Sidney Street.
Zachary Yong, 2nd Year Law, University of Cambridge
- I am a law student with an interest in genetics and public law. In my free time, I like to cook, play the piano, read and exercise.
- Fun fact: I enjoy listening to Handel’s Oratorios.
Why Rare Disease?
Rare diseases are closely aligned with Athena’s interests in paediatrics and genetics, as 75% of rare diseases affect children and 80% have a genetic origin. To explore this further, Athena took part in a patient-pairing scheme, where she learnt about FOP Friends and the challenges faced by young people living with a rare disease. A few months later, she came across a patient with FOP* — a reminder that raising awareness does make a difference!
*FOP = fibrodysplasia ossificans progressiva. This is an ultra-rare disease, affecting one in a million, where soft tissue (eg muscle, tendons, ligaments) slowly turn into bone. FOP Friends is the UK charity supporting people living with FOP and their families.
Why Cam Half for CamRARE?
We wanted to fundraise for rare diseases and CamRARE came to mind. Having attended RAREfest, we were inspired by the way CamRARE united patients, advocates, and experts to address the challenges faced by people affected by rare diseases. We believe meaningful change requires collaboration, and we appreciate CamRARE’s role in supporting the rare disease community. Additionally, a Cambridge-based charity seemed fitting for the Cambridge Half!
Two wishes for the future of rare disease and how you hope to help
Wish 1: That rare diseases are better understood and prioritised, reducing the stigma and isolation faced by affected families.
We can do our part in raising awareness, sharing stories, and advocating for policies that support rare disease communities.
Wish 2: That all patients, regardless of where they live, can access specialised care, affordable treatments and the support they need.
We hope that by fundraising for CamRARE, the charity can continue its incredible work in building supportive communities, and fostering collaborations with experts to improve treatments and coordination of care.
