Rare mental health resources
Explore three resources that speak to various aspects of rare mental health below.
EURORDIS New Mental Health & Wellbeing Partnership Network
A new EURORDIS Mental Health & Wellbeing Partnership Network was launched on World Mental Health Day on 10th of October 2023!
The Partnership Network brings together experts and stakeholders to drive a community action on mental health and wellbeing for people living with a rare disease, their families and caregivers.
Specifically, the Partnership Network unites and empowers the rare disease community to come together, learn, take action and tailor recommendations to the specific needs of people living with a rare disease, in all policy areas, to ensure the mental health and wellbeing of the rare disease community is improved.
The findings of this network will feed into EURORDIS work across all policy areas.
Applications for the new Partnership Network are still open!
EURORDIS has published a Mental Health & Wellbeing hub!
Explore topics such as:
- Common stressors faced by people living with rare diseases
- The psychological challenges faced by individuals with rare diseases on an individual level, interpersonal level and societal level
- How physical and mental health affect each other
- And more!
Best of all, check out their Resources Hub to watch recordings of their rare mental health webinars on topics like:
- The impact of rare conditions on self-identity
- Living with uncertainty & impact of trauma
- How to deliver a diagnosis
- Psychosocial holistic approach
Unique created a resource for parents, children, and adults affected by a Mental Health condition.
This resource includes numerous sources of support to provide helpful information and reassurance that if you are suffering with a mental health problem, you are not alone in feeling the way you do.
Applying Mental Health First Aid in a Rare Disease Context
If you’d like to take another course on supporting rare mental health, Rare voices Australia have created a free course to assist those working with the rare disease community with Mental Health First Aid.
Developed in consultation with those living with a rare disease, the Companion Resource complements Mental Health First Aid training.
Mental Health First Aid training is not specific to the rare disease experience, so this companion resource will focus on:
- Understanding mental health and wellbeing in the rare disease context.
- Applying Mental Health First Aid in the rare disease community, including promoting awareness of available resources and referral pathways.
- The role of rare disease organisations in supporting the mental health of personnel and communities.
- Self-care and support for employees and volunteers working in rare disease organisations who are providing support to others.
The resource shared here is an external source that Beacon had no involvement in creating. Whilst we believe this resource will be of benefit to our community, we cannot verify the accuracy, completeness, or reliability of the information provided in this resource. Sharing this resource does not imply endorsement, approval, or affiliation, nor have we received any compensation or benefit in return for sharing it. Please exercise your own judgment, and if necessary, consult with a qualified professional when relying on external information.