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New online course for medics launched today: exploring mental health and rare disease

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 Those who complete the module will receive a certificate for their learning record.

About Medics4RareDiseases

Medics4RareDiseases (M4RD) is a registered charity committed to advancing rare disease education for medical professionals, students, and doctors in training, with the primary goal of helping improve the journey through healthcare for people living with rare diseases and achieve an earlier diagnosis. For further information please visit

This course was created by Medics4RareDiseases with funding support provided for the 2022/2023 Work Plans. Sponsorship received from: Alexion, Amicus, BioCryst, Biomarin, Bionical Emas, Gilead, Healx, Kyowa Kirin, Orchard, PTC Therapeutics, Sanofi, Sobi, UCB. And donations received from: James Tudor Trust, Grace Trust, Forrester Family Trust, Kenneth Hargreaves Charitable Trust, Chiesi and Takeda.

Partners, Sponsors and Donors do not have editorial control over the content or running of this or any M4RD activity. Partnership/sponsorship does not equate to endorsement of any company or its products. To find out more about how M4RD works with sponsors, please visit:

About Rareminds

Rareminds is the first specialist, non profit, rare disease counselling and psychotherapy service in the UK, and possibly globally. It aims to provide affordable, timely access to highly specialised counselling for the rare disease community, and campaign for recognition of the importance of specialist mental health support by informing policy, practice and promoting standards of excellence. The team have been providing online counselling and wellbeing services for rare disease charities as independent psychological practitioners since 2014.

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