Cambridge Rare Disease Society

Cambridge Rare Disease Society We are the University of Cambridge Rare Disease Society! "Individually rare; collectively common."

COMPETITION ANNOUNCEMENTWe are working with Medsoc to run a poster competition on Rare Diseases.This is an informal chan...
28/02/2025

COMPETITION ANNOUNCEMENT

We are working with Medsoc to run a poster competition on Rare Diseases.

This is an informal chance to produce a poster displaying your knowledge on RDs, whether you've done months of placement and research in clinical genetics, or you've never heard of the term "rare disease" before.

Open to all students, but most relevant to medics (all yeargroups) and bioNatScis. Teams of up to four allowed.

This is a great opportunity to spend a few hours learning about a new topic, and potentially winning a prize for it...

Judging will take place at 2pm, The Diamond, Selwyn College.

Deadline - 13th of March - submit via link in bio.

Good luck!

Happy Rare Disease Day!Here's a little summary of what we've been up to as a society, and what we're planning on next.We...
28/02/2025

Happy Rare Disease Day!

Here's a little summary of what we've been up to as a society, and what we're planning on next.

We absolutely love working on advocacy alongside our studies, and the Rare Disease community has taught us so much. Our aim is to get more and more students to Care for Rare in Cambridge and beyond!

🦓🦓🦓🦓🦓🦓

Rare Disease Day 2025 is TODAY. 🦓So we thought we'd share our version of why we do what we do - what does the term "indi...
28/02/2025

Rare Disease Day 2025 is TODAY. 🦓

So we thought we'd share our version of why we do what we do - what does the term "individually rare; collectively common" even mean? And how can medics support their rare patients?

We highly encourage checking out Medics 4 Rare Diseases (especially to learn the Red Flags for Rare Disease) and Rare Disease UK , Rare Disease Day, SWAN UK (Syndromes Without A Name) to learn more about Rare Disease advocacy in general.

And can we remind you to tomorrow to Care for Rare. Get those stripey socks out!

Keep an eye on our page tomorrow - we will be sharing posts from other Rare Disease groups, as well as our own information on our work!

Sources:
NIH - "How Many Rare Diseases Are There?" - doi: 10.1038/d41573-019-00180-y
The Lancet - "The global landscape for Rare diseases in 2024" - DOI: 10.1016/S2214-109X(24)00056-1
Frontiers in Public Health - doi: 10.3389/fpubh.2023.1248260

You should know by now that it is 2025 this Friday!Medics 4 Rare Diseases are running a campaign called , as a simple...
25/02/2025

You should know by now that it is 2025 this Friday!

Medics 4 Rare Diseases are running a campaign called , as a simple and fun way for anyone to show that they Care for Rare.

To take part, you need:

- a stripey pair of socks, or another item of clothing
- access to social media and a camera

That's it!

Just take a photo of yourself sporting your stripes this Friday, and post it to social media, making sure to use the hashtag, and tag Medics for Rare as well.

Our committee is planning on taking part, and if anyone has any questions, or a stripey photo you'd like us to post on the day, either leave a comment here or message us!

🦓 Rare Disease Talk 🦓We are thrilled to welcome Dr Andy Curry to speak to us about congenital heart defects and his exte...
16/01/2025

🦓 Rare Disease Talk 🦓

We are thrilled to welcome Dr Andy Curry to speak to us about congenital heart defects and his extensive work in international education and patient care.

This is a great opportunity for medics at all stages of the course, with links to anatomy, embryology, pharmacology and physiology.

As always, anyone is welcome- medics, Nat Scis or anyone with an interest in the heart.

Date: 27th of February 2025
Time: 5pm
Location: Anatomy lecture theatre, Downing Site

Sign up here: https://docs.google.com/forms/d/e/1FAIpQLSeNxrv9UX-DuwaYH_Iil-qJ9asJkmSc8AqS4vlkLLTsxzxpLA/viewform?usp=dialog

See you there!

🦓 Rare Disease(s) Spotlight 🦓November is Diabetes awareness month, and while types 1 and 2 diabetes are relatively commo...
30/11/2024

🦓 Rare Disease(s) Spotlight 🦓

November is Diabetes awareness month, and while types 1 and 2 diabetes are relatively common, there are actually many more types of diabetes- a lot of which are related to rare diseases!

So, as November draws to a close, we wanted to highlight a few of the rarer types of diabetes.

It's important to remember that a patient presenting with the major symptoms of diabetes (polyuria, polydipsia, weight loss etc) may not have type 1/2 diabetes mellitus- it could be a zebra... This is a time to remember the rare disease red flags: if a child has had symptoms since birth and has multiple organ systems involved then it could well be a rare disease associated with diabetes.

For medics here at Cambridge- 1As especially will know all about diabetes mellitus from MIMS this term, and will be covering renal physiology next term, where DI is relevant. For 1Bs, CV and renal pharma has a few linkers to the overall management of obesity and conditions like type 2 diabetes.

Other sources of information are listed on the last slide and patient groups are tagged below. Happy reading!


🎉 New Initiative Announcement 🎉One of our goals as a society has always been to provide support for students living with...
28/11/2024

🎉 New Initiative Announcement 🎉

One of our goals as a society has always been to provide support for students living with and caring for others with rare diseases in Cambridge.

We are pleased to announce RareConnect - our new group for rare students to meet each other and share support and ideas.

It can be hard managing a chronic illness while studying, let alone a rare disease. But there are loads of students out there having the same experience, who all have the potential to help each other.

We are accepting sign ups via a Google form, and we are hoping to have our first informal meet-up in early Lent Term 2025. And we hope to grow into whatever students need from there!

Sign up today to receive email updates:

https://forms.gle/berWBsM9sfC2ZLf26

We can't wait to meet you! 🦓

This past Saturday the 23rd, several of our committee members (Jenny, Athena, Katy (me)) attended at the Guildhall, Ca...
26/11/2024

This past Saturday the 23rd, several of our committee members (Jenny, Athena, Katy (me)) attended at the Guildhall, Cambridge.

This is a 2-yearly event hosted by to bring together the rare community, through talks, artwork, performances and exhibitions.

On Friday the 22nd I also had the pleasure of watching Strictly Rare- a collection of performance and art pieces by rare patients and researchers. This included UniqueFeet- CamRare's family support group putting on an amazing musical performance, as well as comedy, original songs and artwork.

It was so wonderful talking to all the patients, families, researchers and advocates here today. Everyone was so welcoming and passionate about rare disease support and research. This was a true patient-centred community.

We absolutely cannot wait for the next in 2026!

🧬Rare disease spotlight 🧬CamRDS is pleased to be continuing to raise awareness of individual rare diseases throughout th...
18/11/2024

🧬Rare disease spotlight 🧬

CamRDS is pleased to be continuing to raise awareness of individual rare diseases throughout the year.

We will be posting on an intermittent basis, highlighting specific conditions or groups of conditions. These will be scheduled on awareness days for these conditions, and/or linked to relevant parts of the medical course here at Cambridge.

Today's post is about LMNA muscular dystrophy. This is an ultra-rare condition, and a great clinical application for the 1A HOM course to get you thinking about muscle cell physiology.

LMNA awareness day is the 18th of November, and the colour for muscular dystrophy is orange.

For more information visit
Muscular Dystrophy UK
Or check out patient advocate page (instagram)

🦓 Upcoming Rare Disease Talk 🦓The Rare Disease society is pleased to announce our first in-person event of the academic ...
14/11/2024

🦓 Upcoming Rare Disease Talk 🦓

The Rare Disease society is pleased to announce our first in-person event of the academic year:

We are welcoming Professor Tim Cox, Emeritus Professor of Medicine, to speak about his experience and research of lysosomal storage disorders.

This presents an incredible opportunity to hear about a complex family of rare diseases, and the ongoing research being conducted into metabolic pathologies.

Open to anyone- but especially relevant for medics, biological sciences students, or anyone with an interest in metabolic diseases!

We look forward to seeing you there at 5pm on 20/11/24 in the Hodkin Huxely room, PDN.

🦓 Cambridge Rare Disease Society 🦓We are excited to announce our first collaboration with Cardiff and Oxford Rare Diseas...
06/11/2024

🦓 Cambridge Rare Disease Society 🦓

We are excited to announce our first collaboration with Cardiff and Oxford Rare Disease Societies!

When: Wednesday 6 November 7-8pm

Where: Zoom
https://cardiff.zoom.us/j/83746613167?pwd=apGr00hubbiy36FApxshFB0HgSPx8J.1

Prof Angus Clarke is the Emeritus Professor in Clinical Genetics at Cardiff University, and has held roles on the Council of the British Society of Genetic Medicine, and the Board of the European Society of Human Genetics.

His talk, titled "Reflection at the End of a Career in Rare Diseases”, will be inspirational to medics, researchers and scientists interested in genetics and rare diseases, and in particular, muscle-related diseases.

Event link: https://facebook.com/events/s/talk-prof-angus-clarke-reflect/1534139940794826/

Address

Cambridge

Website

Alerts

Be the first to know and let us send you an email when Cambridge Rare Disease Society posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organisation

Send a message to Cambridge Rare Disease Society:

Shortcuts

Share

Category