Supporting mental health
The impact of rare diseases on mental health is well known for people living with and caring for someone with a rare disease. It can be difficult to separate physical from mental health, and a rare disease diagnosis can have a huge impact on the mental health of people living with a rare disease. There is also a large impact on the mental health of people caring for rare disease patients. Patients and their families may not have time to worry about mental well being, as they can be too busy worrying about healthcare and treatment. This means they might forget to look after their mental health, which can be bad for their long-term well being.
This course aims to give patient organisations a better understanding of mental health in the rare community. This includes how issues may present in different groups. The course will also provide information on existing resources and tools.
With thanks to:
Costello Medical provided pro-bono support in the creation of this course.
Resource type
Course
Skill level
Beginner
Duration
Est. 90 minutes
Last updated
June 2021
Resource type
Course
Skill level
Beginner
Duration
Est. 90 minutes
Last updated
June 2021
What will you learn in this course?
- Supporting people through grief and loss, including examples of approaches that have been used within the rare community.
- How to support people suffering with poor mental health, including examples of approaches that have been used within the rare community.
- Background on mental health in the rare community.
- The importance of protecting people’s mental health, and how to set up policies to do this.
- A summary of useful resources on the topic of mental health.
Who is this course for?
This course is designed for patient organisations who want to gain a better understanding of mental health in the rare community. This includes how issues may present in different groups.
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Resource Content
Background: Mental Health in the Rare Disease Community
Safeguarding and Supporting Mental Health
Example Approaches to Mental Health Support for Rare Disease Organisations
Supporting Communities through Grief and Bereavement
Example Approaches to Grief and Bereavement Support for Rare Disease Organisations