m4rd's reflection on priority area two of the uk rare disease framework Medics 4 Rare Diseases is particularly invested in actions addressing Priority 2 ‘increasing awareness amongst healthcare professionals’. M4RD is a registered charity that is striving to drive attitude change towards rare diseases amongst medical professionals. It does this by providing education and practical tools for medical professionals and medical students about rare disease in order to reduce the diagnostic odyssey and improve the patient experience. The charity focuses its education on the relevance of rare disease to everyday clinical medicine, equipping doctors to manage their patients with rare conditions more effectively and sensitively. The M4RD team were really encouraged by the identification of healthcare professional awareness as a key Priority for action by the DoHSC. Over the last year it has been an exciting time working with the different nations, to different extents, on forming their Action Plans. M4RD’s CEO, Dr Lucy McKay, is part of The UK Rare Diseases Forum which helps advise the UK Rare Disease Implementation Board. It has also been a steep learning curve, as we have learned the ways that different stakeholders work together in this area.
BELOW IS AN OUTLINE OF M4RD'S WORK IN THIS AREA WRITTEN BY EMMA HUSKINSON, COMMUNICATIONS LEAD FOR M4RD. Reflecting on what we know so far, about plans addressing Priority 2, Actions outlined are nation-specific; while there is a great wish to share and learn from each other, we don’t seem to have found the right environment in which to do this. M4RD is one potential facilitator of this but we are acutely aware that our understanding is founded in lived-experience of the medical profession and we can’t speak for all healthcare professionals. Naturally, there are overlaps between needs of different professions but it is important that Actions are carefully designed and targeted in order to have the greatest impact.
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