Oxford Rare Disease Society

Oxford Rare Disease Society Oxford medical student society founded in 2023, dedicated to enhancing awareness and education of rare disease.

We are really grateful that Lipodystrophy UK could join us today at our first conference! It’s great to have so many pat...
23/02/2025

We are really grateful that Lipodystrophy UK could join us today at our first conference! It’s great to have so many patient groups to talk to our attendees and students.

4 more days until our first student conference: “Connecting the dots”!!Happy to announce our second set of speakers who ...
19/02/2025

4 more days until our first student conference: “Connecting the dots”!!
Happy to announce our second set of speakers who will be joining us on the 23rd of February.
- Dr Helen Stewart from the Central and South Genomic Medicine Service Alliance and PI of the Generation Study in Oxford
- Emma de Pretis founder of Edie, a Med-Tech startup and diagnosed with Idiopathic Pulmonary Arterial Hypertension.
- Dr Rebecca Sanders, Co-founder and chair of Lipodystrophy UK.
- Siobhan Dunn also from Lipodystrophy UK.
- Dr Jasmina Cehajic Kapetanovic, a clinician scientist and Vitreo-retinal surgeon.

A massive thank you to all of our speakers, and looking forward to hearing you all on Sunday.

Tickets still available here: https://www.eventbrite.co.uk/e/connecting-the-dots-oxford-university-student-rare-disease-conference-2025-tickets-1204690835719?fbclid=PAZXh0bgNhZW0CMTEAAabd8TgPhWiCO5aOrQob_1nF-vGlFUfZ8OWsDb5ylvbDtLiSxdcqvqII6VQ_aem_FSRj7GcjkZp20iABuwJ-JA

We are just two weeks away from our first inaugural conference in Oxford! Oxford Rare Disease Society and The Sherringto...
10/02/2025

We are just two weeks away from our first inaugural conference in Oxford! Oxford Rare Disease Society and The Sherrington Society are hosting the first Rare disease student conference on the 23rd of Feb from 9:30-17:00 Magdalen College, University of Oxford.

We are happy to announce our first set of confirmed speakers. There is a wide range of speakers from patient groups to individuals with lived experience, academic speakers and founders/CEOs of rare disease organisations. So please come if you are interested in any or all aspects of Rare disease.

These are our first batch of speakers!

- John James, OBE at the Sickle Cell Society
- Professor Dr Laurent SERVAIS, professor of paediatric neuromuscular disease at the University of Oxford.
- Lucy McKay, CEO at Medics for Rare Disease
- Aisha Seedat, A young person with lived experience growing up with a rare disease.
- Helen Evans, CEO at Cavernoma Alliance UK
- Dr Lucy Hanington, Specialist registrar of Clinical genetics in Oxford.
- Rachel Rimmer, Founder of Rare Autoinflammatory Conditions'​ Community- UK (RACC-UK)

A massive thank you to all our speakers for making our conference possible. Please stay tuned for our second set of speakers coming in the next week.

There are both in-person and online tickets still available from:
https://www.eventbrite.co.uk/e/connecting-the-dots-oxford-university-student-rare-disease-conference-2025-tickets-1204690835719?fbclid=PAZXh0bgNhZW0CMTEAAaaqKXOGeLU0PfHEzhi_l0XAuyumZ-jcPPRYGlR1dLtFt2tyihpDzJ_dWPk_aem_T5vCTZOMBQg2Ns4Ug3P2iA

Oxford Rare Disease Society and Sherrington Society are delighted to present our first Rare Disease Student Conference, ...
20/01/2025

Oxford Rare Disease Society and Sherrington Society are delighted to present our first Rare Disease Student Conference, “Connecting the Dots”. Join us on 23 Feb for an exciting day of talks, networking, and more.

Also calling for submissions for our poster competition!

Stay tuned for schedule and speaker announcements.

🔗 Links to tickets and poster competition are in our bio and below

Ticket links: https://www.eventbrite.co.uk/e/connecting-the-dots-oxford-university-student-rare-disease-conference-2025-tickets-1204690835719?fbclid=PAZXh0bgNhZW0CMTEAAaaVz3Q-HfGT3_vFzpXk3luK4uM5qwt9P4JA3TPS5WuOodSyNcwqPEl9ags_aem_JgYe1dRxilgkC_9lBWTOPg

Link for poster submissions:
https://docs.google.com/forms/d/e/1FAIpQLSfrXWSm3Ctq9G0nBeKEsWxyabOZ0Ck7-5V__YThhHSOst3hdg/viewform

Who are we? Meet the faces behind Oxford Rare Disease Society, and read about our motivations for wanting to enhance edu...
06/12/2024

Who are we? Meet the faces behind Oxford Rare Disease Society, and read about our motivations for wanting to enhance education of Rare Disease amongst medical students! 🦓🩺🤍

A belated post, but we had an incredible time at the Cambridge Rare Disease Network a few weekends ago! 🦓💫🧬 It was a j...
06/12/2024

A belated post, but we had an incredible time at the Cambridge Rare Disease Network a few weekends ago! 🦓💫🧬 It was a joyous festival of art, science, inspiring activities and fun imaginative ways to build new connections with the public & the rare community.

We loved helping out on the Medics4RareDiseases ‘7 Red Flags of Rare Disease’ interactive stall with other M4RD ambassadors!

The 7🚩 Study highlights common diagnostic clues that may point to a person having an underlying rare condition. (You can read the study here https://www.m4rd.org/2024/05/21/study-identifies-red-flags-of-rare-disease/ !)

As students, it was an honour to learn directly from those in the Rare community, and from scientists working in Rare research! It enables us to reflect on vital aspects that we must take into our future practice as Rare-aware health professionals.

Thank you to everyone we spoke and connected with. We already can’t wait for the next on one in 2026!!

1-4 M4RD 7🚩Stall and the beautiful main Exhibition Hall
5 - Mitochondrial pinball with the Cambridge MRC Mitochondrial Biology Unit
6 - Linseigh Green raising the roof during the ‘Strictly Rare’ launch evening 🎶🎤
7 - ‘The Flame of Life (2024)’ ceramic mitochondrial artwork by Charlotte Morrison
8 - ‘Rare and Hot’ panel discussing the vital intersection between climate change, sustainability and impact on people with rare diseases

RARE OF THE WEEK ANSWER: Did you get it? Well done to those who said Osteogenesis Imperfecta (OI)!🦴 OI can be highly var...
26/10/2024

RARE OF THE WEEK ANSWER: Did you get it? Well done to those who said Osteogenesis Imperfecta (OI)!

🦴 OI can be highly variable from person to person. OI Type 1 is often called an 'invisible disorder', which can lead to delays in diagnosis and accessing care.

🩻 In this case, despite symptoms from childhood, Steve*'s diagnosis wasn't recognised until age 31y, when it was picked up in his daughter!

🦴 OI is more than just ‘brittle bones’. Chronic muscle pain, fatigue, joint hypermobility, hearing loss, as well as heart, dental and respiratory problems can also impact a person's quality of life & mobility.

Info taken from Brittle Bone Society website. Huge thank you to (IG) for sharing your story with us! 💙

Happy Friday!RARE OF THE WEEK is back! 🩺🦴(This one is based on real experiences which have been kindly shared with us)❓W...
27/09/2024

Happy Friday!

RARE OF THE WEEK is back! 🩺🦴

(This one is based on real experiences which have been kindly shared with us)

❓What could the diagnosis be for Steve & Sophie?
❓What other features could aid diagnosis?
❓What could be other differentials?

Comment your suggestions below!
(Answers revealed next week)

📣 New logo alert! 📣 AND we're opening recruiting for 2024/25!Don't miss this opportunity to build your student leadershi...
09/09/2024

📣 New logo alert! 📣

AND we're opening recruiting for 2024/25!

Don't miss this opportunity to build your student leadership skills, learn more about rare disease, connect with those in the field of rare medicine, research & advocacy, and help make a difference to medical education.

More details on available committee roles on application form here: https://forms.gle/E3T1jfKuHn4p5fs39

Feel free to message us or [email protected] with any questions!

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