In September 2023, with the support of a dedicated team, I founded the Cambridge University Rare Disease Society (CamRDS). This new student society aims to raise awareness about rare diseases, particularly among medical students, while fostering a supportive community for those living with rare conditions.
What inspired the creation of this society?
The idea of establishing a student society came to me after I attended RAREfest in November 2022. I stumbled upon it while scrolling through social media, and I’m so glad I decided to attend! As a preclinical medical student at the time, I was eager to learn about the ongoing scientific research. However, what truly surprised me was discovering the collective prevalence of rare diseases (1 in 17) and hearing the powerful stories of patients. Learning about their diagnostic journeys and the profound impact healthcare professionals can have when they #daretothinkrare left a lasting impression on me. The human experiences, rather than the science, resonated most deeply with me that day.
At RAREfest, I met Dr. Sarah Leiter, a CamRARE and M4RD ambassador, who shared that she had established a rare disease society just before the pandemic. Unfortunately, the founding committee graduated before the society could flourish.
With support from the M4RD team, I organised an event in March 2023 titled “Reframing Rare Disease,” hosted by the Clare College MedVet Society. The event demonstrated significant interest from both the student body and the local community in engaging with rare disease education. Many students were inspired by the event and motivated to spread awareness of rare diseases. Together, we formed an active and passionate committee for this new society. We’re incredibly grateful for the support from M4RD and CamRARE during the Freshers’ and Societies’ Fairs in October 2023, where we gained over 200 members!
What has the society been up to this past year?
Over the Autumn 2023 and Spring 2024 terms, we’ve had the privilege of hosting some incredible speakers who provided deep insights on a variety of topics:
- We first collaborated with the Cambridge University Oncology Society, inviting Dr Jessica Taylor (Gilbertson Lab, CRUK) to discuss designing novel therapeutics for treating pediatric brain tumours.
- In partnership with the Medical Humanities Society, we welcomed Janet Willicott, who spoke about the role of medicolegal professionals in addressing rare disease care, and Oliver Jack Brown, who shared his lived experience with Ehlers-Danlos Syndrome (recording available here).
- We also invited Prof. David Rowitch (Head of the Department of Paediatrics) to discuss progress in diagnosing and treating rare neurogenic diseases, focusing on Pelizaeus-Merzbacher Disease (recording available here).
- Finally, Dr. Rick Thompson (Beacon) delivered a talk on repurposing drugs for rare diseases.
Our main event was the “Galactic Genomes: Exploring the Universe of Rare Diseases” conference, held at the School of Clinical Medicine on Saturday, May 4th, 2024 (Star Wars Day, hence the theme!). This event was a collaborative effort between CamRDS and the Cambridge University Genomic Medicine Society, supported by Medics4RareDiseases. I was determined to make this event stand out from other student conferences, aiming to leave a lasting impact on the attendees, much like RAREfest22 did for me. To achieve this, we went beyond the typical academic talks and research poster competitions, placing a strong emphasis on the voices of rare disease patients and charities:
- Fifteen rare disease charities were represented, with attendees having the opportunity to visit stalls and interact with advocates during the breaks.
- John James OBE delivered a talk on Sickle Cell disease the day after NICE approved a novel treatment for the NHS!
- Dr Lucy McKay (M4RD) hosted a Q&A panel featuring advocates from PCD Support UK, Annabelle’s Challenge, and Metabolic Support UK.
The conference was a highly successful event, with over 70 attendees!
What is planned for the upcoming year??
In the upcoming year, we aim to increase student engagement with our society by collaborating with course and department leads to organise talks that align with and expand the teaching curriculum. We also hope to work with teaching leads to integrate rare disease education into the curriculum. Since medicine is about treating the patient, not just the disease, we aim to keep this focus central as we strive to make our talks both academically enriching and an opportunity to listen to and engage with patient voices. Additionally, we want to strengthen our efforts to create a supportive community for students living with rare conditions in Cambridge.
We would love to have your support! Follow us on social media to stay updated on our events:
Instagram: @cambridgerds
Facebook: Cambridge RDS
You can also reach out to us via Instagram or email: cambridgerds@gmail.com.
