Tuesday 4th July 2023 – Medics4RareDiseases (M4RD) has today launched a new online course, ‘Mental Health and Rare Disease’. Consisting of 8 interactive lessons, each focuses on a different topic related to the challenges that living with a rare disease poses to a person’s mental health. Lessons will be going live weekly, starting today. This course forms part of M4RD Learn platform and complements the charity’s existing ‘Rare Disease 101’ course.

3.5 million people in the UK live with a rare condition. These conditions have similarities in that they are often chronic, multi-system and can take years to diagnose. Most (80%) are genetic and manifest in childhood (70%). Rare diseases therefore come with a distinct and significant set of mental health challenges for patients, parents and carers. Therefore, proactive mental health support is essential for the holistic management of these complicated conditions. M4RD joined forces with psychotherapist Kym Winter from Rareminds to develop this comprehensive course. Rareminds provides professional counselling and wellbeing resources for the rare disease community.

As with all of M4RD’s learning content, this course has been developed with patients’ real-lived experience at the core. Lessons include novel scenarios and specific challenges such as the presence of an inheritable or genetic condition and the impact it has on patients and families. There are practical tips on how to better communicate about mental health, with patients and carers. It also includes steps that medics can take to maintain their own mental health whilst supporting the mental health of others.

Dr Lucy McKay, Founder and CEO of M4RD said: ‘This comprehensive course provides doctors and medical students with an invaluable insight into the impact that rare diseases have on patients’ mental health. Critically it gives an enhanced understanding of why it is absolutely essential to always take mental health into account when caring for patients with rare conditions. This was a truly collaborative project and we have been fortunate to work so closely with Rareminds who are experts in the mental health needs of those people living with rare conditions. We also had input from a range of diverse patient advocacy groups. The insight provided by these groups really helped make this a unique learning resource for doctors and medical students.’

Kym Winter, Founder and CEO of Rareminds said: ‘Those living with rare conditions often face multiple, overlapping challenges to mental health and wellbeing. These include their impact on family life and future choices (including the implications of genetic inheritance), anxiety in the face of degenerative impacts, unpredictable and difficult symptoms and uncertainty about reliable access to the health and social care that may be needed. Low disease awareness and a complex diagnostic odyssey can erode trust in healthcare professionals and systems, and the psychological burden of being the ‘expert patient’ can be high. By creating this course with M4RD, we hope to facilitate a greater understanding of the emotional and psychological impact of rare conditions and to inspire confidence in more open conversations between healthcare professionals, patients and carers about mental health as a fundamental – but often side-lined – aspect of rare disease patient care.’

Lesson one is an ‘Introduction to Mental Health and Rare Disease’. Access will be freely available to those who have completed Rare Diseases 101, available here www.learn.m4rd.org. Those who complete the module will receive a certificate for their learning record.

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