Medics4RareDiseases is excited to announce that you can now register for our 11th annual symposium! The Unusual Suspects 2024: Rare Diseases in Everyday Medicine will take place on the afternoon of 21st February at the Royal Society of Medicine, London, in association with The Medical Genetics Section. Come along to learn from rare disease patients and advocates in the run up to Rare Disease Day!
What is it, where, and when?
Every year M4RD hosts an event for healthcare professionals to emphasise that rare diseases are collectively common and relevant to every medical student and medical professional. We do this in a way that highlights the rare disease patient experience, by inviting a variety of guest speakers including those with lived experience. The focus for this year’s event is communication and inclusivity in rare disease, as we recognise that many rare disease patients will never benefit from a specialist service.
Why is this relevant?
Rare diseases cross all disciplines and collectively they affect 3.5 million people in the UK, however the majority of patients with a rare condition will take years to reach a correct diagnosis. The Department of Health and Social Care’s ‘UK Rare Diseases Framework’ highlights healthcare professional awareness of rare diseases as a key health priority.
However, there is often a lack of clinical evidence when it comes to rare diseases and so relying on guidelines and evidence alone simply does not work effectively for this huge subset of patients.
This medical conference aims to empower clinicians to change the narrative by focussing on what healthcare professionals can do when it comes to caring for those with rare diseases.
Who are the speakers?
The confirmed speakers for this event are:
- Dr Lisa Kauffmann, Consultant community paediatrician & Associate Medical Director at children’s community health services, Manchester Local Care Organisation
- Jono Lancaster, Author of ‘Not All Heroes Wear Capes’, and co-founder of charity ‘Love Me Love My Face’, which supports those with Treacher Collins Syndrome
- Kevin Ward, NHS Healthcare Improvement Scotland ‘What Matters To You?’ Campaign
- Kerry Leeson, CEO, Breaking Down Barriers
- Aisha Seedat, M4RD Patient Ambassador and her sister, Saffiya Seedat, ARDent advocate for individuals with rare diseases
- Hope Russel-Winter, semi-finalist on The Voice UK 2023
- The winner of the Student Voice Prize 2023 – to be announced
Why should you come along?
You will gain valuable insight into what it is like to live with a rare condition and the common challenges faced by patients and carers. This will all feed into an improved understanding of how to best approach management with sensitive communication and an inclusive attitude.
One attendee from last year said: “It changed my perception on rare diseases and actually furthered my interest in it, hoping that I could specialise in a topic like that for medicine.”
Our CEO, Dr Lucy Mckay, says: ‘Our yearly symposium provides a fantastic opportunity to bring together an eclectic group of inspiring spokespeople to share their stories, provide invaluable learnings and empower medical professionals to suspect and better support those living with rare diseases.’
How to sign up!
Last year we had over 270+ people register, so make sure you reserve your place here.
If you have any questions, please email firstname.lastname@example.org
We hope to see you there!