NEW Rare Diseases Students’ Society at Cambridge University!

Mar 21, 2024

This weeks blog was written by Jenny Yang, founder of Cambridge Rare Disease Society (CamRDS).

The new society, set up in September 2023, aims to raise awareness of rare diseases, particulary amongst the medical student population, as well as to bring together a supportive community for students living with a rare condition.

What inspired the organisers to set up the society?

I was inspired to set up a student society after attending RAREfest in Nov 2022. I was scrolling on social media when I saw the event being advertised and it piqued my interest.

I’m really glad that I went to the event!

Being a preclinical medical student at the time, I was interested to learn about the scientific research being conducted.

However, I was surprised to learn of the combined commonality of rare diseases (1 in 17) and was moved by hearing patient stories, learning of diagnostic odysseys and the significant impact of healthcare professionals who #DareToThinkRare on the quality of lives of patients.

It was not the science, but the human lived-experiences that left the greatest impact on me that day.

 

The table is set up with leaflets, pin badges, and lanyards from M4RD, and behind the table are two standing posters – one introduces M4RD, and the other features a zebra and the words “Rare Diseases are individually rare but collectively common”; Nadine, a member of M4RD, is sitting behind the table, smiling at the camera.

I learnt from a M4RD ambassador that a rare disease society was set up just before the pandemic, but the founders graduated before the society was able to flourish. With help from the M4RD team, I organised an event in March 2023 (“Reframing Rare Disease”), hosted by the Clare College MedVet Society. The success of this demonstrated an interest from the student and local population for engaging with rare disease education.

Many students were inspired by this evening and impassioned to spread the knowledge of the importance of rare disease awareness. Together, we now form an active and passionate committee for the University’s new society.

We’re really grateful for the help from M4RD and CamRARE with the Freshers’ Fairs and Societies’ Fairs in October 2023, where we gained over 200 members!

there is an array of M4RD posters, lanyard and pin badges, as well as sign<br />
up forms for the smaller clinical school societies fair.)
the table is set up with leaflets and posters from CamRARE; there are also<br />
two “Rare Bears” –teddybears sewn from differently patterned colourful pieces of fabric.

What has the society been up to during last term?

Over the autumn term 2023, we invited some incredible speakers who have provided thoughtful insight on a wide range of topics:

 

  • We first held a collaboration with the Cambridge University Oncology Society, inviting Dr Jessica Taylor (Gilbertson Lab, CRUK) to discuss designing novel therapeutics for treating paediatric brain tumours;
  • In a collaboration with the Medical Humanities Society, we invited Janet Willicott (discussing the role of medicolegal professionals in tackling rare disease care) and Oliver Jack Brown (sharing his lived experience with Ehlers-Danlos Syndrome). Watch the recording here.
  • Finally, we invited Prof David Rowitch (Head of the Department of Paediatrics) to cover the progress for rare neurogenic diseases in terms of diagnosis and treatment, with a focus on Pelizaeus-Merzbacher Disease. Watch the recording here.
shows Jessica Taylor standing next to a screen, talking to a room of students.)
Oliver Brown, a tall young man, standing next to a projector screen with a slide that has the title “Ehlers-Danlos: A lived experience”.

In the future, we want to think bigger, and we want to maintain our focus on the importance of raising awareness about rare diseases, alongside organising academically engaging talks, with chances to listen and engage with patient voices.

We also want to work harder on creating a supportive community for students living with a rare disease in Cambridge in the future.

What have you got planned for the upcoming year?

Firstly, we were excited to welcome the scientific team from Beacon (REMEDi4ALL) to deliver a talk on drug repurposing for rare diseases at the end of January 2024.

We are working towards our first conference on Saturday 4th May 2024 (save the date!) to be held at the School of Clinical Medicine (CB2 0SP).

This will be a joint effort between the Rare Disease Society and the Genomic Medicine Society.

Whilst being academically engaging, we hope that, like the impact of RAREfest on me, the patient and human side of rare diseases will leave the greatest impact on the attendees.

We would love to have your support! Follow us on social media to keep updated with our events and for details of our upcoming conference, including when tickets are released. We would love to see you there!

Instagram: @cambridgerds

Facebook: Cambridge Rare Disease Society

You get in touch with us by messaging on Instagram, or via email: cambridgerds@gmail.com

Thank you, Jenny for sharing your guest blog with us about the Cambridge Rare Disease Society.

We hope you enjoyed reading it!

If you’d like to write a guest blog for Beacon, find out more about sharing your story.

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