Look-back – The Unusual Suspects: Rare Disease in Everyday Medicine

February was a busy month for M4RD!! Prior to Rare Disease Day we held our 10th annual symposium, with the Royal Society of Medicine on 15th February – our first in-person event since 2020.  The focus of the event was on mental health, coinciding with the imminent launch of the M4RD Learn MH module co-written with Rareminds, whose founder participated as a speaker.

Dr Shwetha Ramachandrappa, Consultant Clinical Geneticist, President of the Medical Genetics Section at the RSM and Chair at Unique opened the event by highlighting how M4RD’s annual symposium has been one of the only spaces available to professionals, patients and industry partners to network and share stories in the rare disease community, providing an inclusive and nurturing environment to forge strong relationships, even during the pandemic.

We had a fantastic line-up of speakers including: Dunstan Nicol-Wilson, patient and author of the Sickle Sagas column at Sickle Cell Disease News and Clinical Project Manager; Kym Winter, CEO, founder and Clinical Director at Rareminds; Dr Hayley Crawford, Associate Professor at University of Warwick Medical School, where she leads the Neurodevelopmental Conditions Research group; and Dr Jane Waite, Senior Lecturer in Psychology at Aston University and Clinical Psychologist. Both Hayley and Jane are part of the team at the Cerebra Network for Neurodevelopmental Disorders; Zheqing Zhang, winner of the Student Voice Prize 2022 and 3rd year medical student at the University of Oxford; and Prof. Ed Wild, Professor of Neurology and Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, Associate Director at the University College London Huntington’s Disease (HD) Centre. 

278 participants registered for the event with 55 people attending in person and 103 joining us online.  The recording has also been watched on-demand by those who couldn’t make it on the day.

A huge thanks to all those involved… you can read the full report written by emotive here and check out our gallery below for some wonderful images captured on the day!

Lottie Mercer, medical student and M4RD ambassador: “So far, one of the highlights was attending the ‘Unusual Suspects’ event at The Royal Society of Medicine. The focus this year was on mental health, and it was humbling to hear about the lived experiences and common challenges faced by people living with rare diseases. The event was also a great opportunity to meet some of the other M4RD ambassadors in person for the first time. There was a fantastic line up of speakers; Zheqing’s talk, highlighted the heartbreaking impact that rare disease can have on an entire family, and explored the emotions and guilt experienced by a surviving sibling.

It was a harrowing story that will stay with me for a long time, and she was a very deserving winner of The Student Voice Prize. From hearing patient’s stories, I took away many lessons about how I might be able to advocate for people with rare diseases in clinical practice, acknowledge the psychological impacts of living with a rare disease and provide support for their mental health. Asking just one simple question such as ‘How are you coping with all of this?’, can be all you need to open up a conversation about mental health, which can be essential in ensuring that individuals with rare diseases feel heard and understood.”

“The speakers were candid and motivating, and hearing about their own experiences made me feel more driven than ever to continue advocating for people who live with rare conditions in my own work.”

Leah Brooksbank, medical student and M4RD Ambassador

If you haven’t already read Zheqing’s winning  essay ‘Diagnosing rare diseases and mental well-being: a family’s story’, head over to the Orphanet Journal of Rare Diseases now and be as impressed as we all were! 

#ShowYourStripes campaign 

The event also allowed us to get even more people involved in our #ShowYourStripes for #RareDiseaseDay’ campaign. We were able to ask participants to show their support for people with rare conditions, by wearing stripy socks for Rare Disease Day! 

Check out the #ShowYourStripes gallery 
Thank you to our 2023 Partners: Alexion Pharmaceuticals, Amicus Therapeutics, Biocryst, Bionical Emas, emotive, Gilead Sciences, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics, Sanofi, Sobi & UCB Pharma.  Thank you to our 2023 Donors: Chiesi Medical UK, RKT Charitable Trust and The Forrester Family Trust.  M4RD receives funding from commercial companies which it works independently from. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see: https://www.m4rd.org/sponsors/