The Unusual Suspects: Rare diseases in everyday medicine #M4RD2020
emotive Reviews ‘The Unusual Suspects’
During the past year M4RD has been working closely with emotive – an independent, award winning global healthcare communications agency – who have helped us to not only rebrand but also worked with us pro-bono on strategy and awareness raising activities and so it was an absolute pleasure to have Aaron Hall and Claire Mitchell attend our annual symposium at the Royal Society of Medicine last month.
It was a really inspiring and moving afternoon, and so interesting to hear from the perspective of each speaker to gain a better understanding of how people’s experiences with rare diseases differ. This helps us ensure we can deliver the best we can for patients, their families and HCPs.
Claire Mitchell, Account Executive
The Importance of Learning from Patients and Advocates
Aaron was particularly moved by the presentation from Dr Alexandra Downes and Karen Harrison from Alex The Leukodystrophy Charity who talked about ‘how the lived experience improves clinical practice in rare diseases’.
Claire and I are part of the team that works closely with Lucy and M4RD as part of our pro bono work at emotive, and this is our second M4RD annual symposium. Hearing Karen talk really drove home why we do what we do at emotive, and it felt like a real moment of clarity for delegates in the room. Everything we had learnt from the speakers throughout the day all came down to this – providing the best care for people, and their families, who are dealing with health conditions that may only recently have been discovered, or may still be entirely unknown
Aaron Hall, Senior Medical Copywriter for emotive
Improving Clinical Care
Karen’s twin sons were both diagnosed with X-linked adrenoleukodystrophy in childhood when Alexander started showing signs similar to dementia. This devastating metabolic disorder results in demyelination, progressive loss of white matter and degredation of the adrenal glands.
Last year Karen attended a training event for Paediatric Trainees at the RSM and was there to speak about her family’s lived experience. Dr Alexandra Downes was in the audience and listened to Karen’s moving talk about her sons. Alexandra couldn’t have known how soon she would then be drawing on the lessons she had learned from Karen’s talk.
The next week she was on-call at a district general hospital when a patient came in with deteriorating symptoms of X-ALD. M4RD brought Alexandra and Karen together at the symposium to discuss how learning about the lived experience helped to improve Alexandra’s clinical care. In this patient’s case there was no intervention that could be made apart from the genuine empathy of a doctor who understood what the family were facing.
Read the Full Review
Thank you to everyone who spoke at and attended ‘The Unusual Suspects: Rare diseases in everyday medicine’. M4RD will be back at the Royal Society of Medicine on 10th February 2021.
You can read Aaron and Claire’s full report from the event below.
https://thinkemotive.com/medics4rarediseases-annual-symposium-2020/
Thank you to the M4RD 2020 Sponsors for making this event possible
