There is no health without mental health.
The relationship between physical and mental health is well established. Increased severity and complexity of a physical health condition, in turn increases the risk to mental health and well-being result in higher rates of depression, anxiety and also where poor mental health can impact on physical health, the capacity to selfcare, resilience. (King’s Fund, Royal College of Psychiatrists & Centre for Mental Health, Mental Health Foundation).
Mental health is a basic human right.
The World Health Organization’s definition of mental health, seeing it as something that is strongly linked to opportunities, and participation in the community:
“A state of mental well-being that enables people to cope with the stresses of life, realize their abilities, learn well, (making healthy choice) and work well, and contribute to their community. It is an integral component of health and well-being that underpins our individual and collective abilities to make decisions, build relationships and shape the world we live in. And it is crucial to personal, community and socio-economic development.”
Impact of Rare Disease on Mental Wellbeing
People living with a rare and undiagnosed condition have increased vulnerability and risk factors resulting in them experiencing an accumulative impact on their mental wellbeing, specifically at an individual level.
At an Individual Level
Mental health is an associated co-morbidity for many rare diseases.
At a Population Level
Increased psychological impact associated with the rare diseases journey across all stages of life.
Cross-cutting psychosocial determinants
People living with a rare disease and their families have increased exposure to social inequalities and discrimination, which are risk factors and determinants for poor mental wellbeing.
Rare diseases are medically heterogeneous, however they produce common stressors for patients and their families linked to their rarity, which can have an increased psychological impact on the whole family.
The common stressors that are related to living with a rare condition include long diagnostic journeys, limited access and availability of treatment options, uncoordinated care pathways, living with disabilities, limited work opportunities, being obliged to reduce/stop education/work for long periods of time, and social stigma. Most rare conditions appear in childhood, and the mental wellbeing is impact on affected children, as well as their siblings and parents, can be severe.
85% of people living with a rare disease declare that the rare disease impacts upon several aspects of their physical and mental health and of their everyday life and are three times more unhappy and depressed than the general population.Rare Barometer Survey 2017
The mental health and wellbeing of people living with a rare disease remains hidden and neglected due to stigma and discrimination and is frequently overshadowed by the other medical complexities associated with rare conditions.
The lack of recognition of the unmet mental health needs of the rare disease community in health, social, educational and employment policy further marginalises and excludes this vulnerable group, due to the lack of policy actions and support available to address their needs.
The rare disease community has identified as an absolute priority the need to look beyond the physiological symptoms of a rare disease and take concrete action to address the psychological impact associated with these complex conditionsRare 2023 Foresight Study, 2021
Due to the complex intersectoral unmet needs of rare diseases, people living with a rare disease are disproportionately affected by the accumulated risk factors experienced by being situated in multiple intersectional vulnerable situations: many rare diseases affect all ages from child, young people and throughout adulthood, with women being the majority of family carers; many live with a disability and are socially excluded. Intersectional needs result in increased psychosocial risks in education and at work, being isolated, discrimination and social stigma.
Mental Health is an EU Public Health Priority
Mental health is now being recognised as a public health priority in the European Union, notably in the European Commission President von der Leyen’s State of the Union speech at the European Parliament on the 14 September 2022. The eagerly awaited European Commission Communication on A Comprehensive Approach to Mental Health was published on the 7th June 2023.
EURORDIS has been advocating for the new Comprehensive Approach to Mental Health to be inclusive of all people in vulnerable situations, specifically the recognition of people with an existing health condition, such as chronic conditions and rare diseases. As the World Health Organization (WHO) has recognized “people with an existing health condition” as one of the main vulnerable groups who were more likely to develop symptoms of mental disorders following the pandemic, along with young people and women (WHO 2022).
The new Commission Communication will be supported in the coming years with targeted community actions, initiatives and grants, providing an opportunity to recognise the unmet needs and accumulative impact on mental health and wellbeing of people living with a rare disease and their families, and to take concrete action across all policy areas to address these unmet needs.
EURORDIS objectives in the area of mental health are three-fold
Prevent poor mental health through access to health promotion, prevention interventions, early detection and enhance continuity of care through improved access to and coordination of holistic care and access to high-quality psychological support services and treatments.
Improve availability and access to high-quality psychological support services and treatments and enhance continuity of care through improved access to and coordination of holistic care.
Strengthening EU and national system capacities, as well as services and professional competency, to understand the intersectoral needs between rare diseases and mental health, to optimise policies, practice, and interventions.
EURORDIS Action to Improve the Mental Wellbeing of the Rare Disease Community
EURORDIS wishes to leverage the opportunity of the new Communication on a Comprehensive Approach to Mental Health to make visible the unmet mental health needs of people living with a rare disease and their families and take affirmative action to address these needs.
EURORDIS is establishing a new EURORDIS Mental Wellbeing Partnership Network to support and coordinate of the development and delivery of community activities in the framework of EURORDIS Mental Wellbeing Initiative.
EURORDIS New Mental Wellbeing Partnership Network
A new EURORDIS Mental Wellbeing Partnership Network will be launched on World’s Mental Health’s Day, the 10 th of October 2023.
The Partnership Network’s overarching objective is to promote
the development of a mentally healthy community that
reduces the accumulated impact of rare diseases on mental
health and wellbeing among people living with a rare disease
and their families.
The Partnership Network will bring 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 will unite and empower 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.
EURORDIS launched a call for expressions of interest to join the new Partnership Network at a EURORDIS Membership Meeting (EMM 2023) Satellite Workshop – Enhancing the Mental Wellbeing in the Rare Disease Community held on 25.05.2023.
Applications for the new Partnership Network are still open!
EURORDIS is looking for dedicated volunteers to be active in the Partnership Network. If the rare disease you represent has an impact on your mental health and wellbeing, or the ones you represent, we would like to hear from you and ensure that your expertise and insights are included to shape the work of the Partnership Network.
Don’t miss this opportunity if you are passionate about making a difference, ready to contribute your knowledge and experience to ensure that together we:
- Increase awareness of the impact of rare diseases on mental health and wellbeing on people living with a rare disease and families.
- Build competencies and empowerment of rare disease advocates to engage in actions in all policies that address rare diseases and the mental health needs of the community.
- Identify population needs of the rare disease community related to mental health and wellbeing.
- Identify best practice and evidence-based approaches that can be leveraged to prevent mental health co-morbidities through access to health promotion, prevention interventions.
Next Events & News
Launch of the Mental Wellbeing Partnership Network on World Mental Health Day!
Join us in celebrating the inaugural meeting hosted by the Mental Wellbeing Partnership Network, exclusively crafted for its members:
- Date: October 10th, 2023
- Time: 14:30 – 16:00
- Duration: 90 minutes
During the meeting, we will be sharing the key Overview of the Partnership Network: its context, aims, objectives and structure, and we will provide space for members to network with other members while giving feedback on a specific topic.
During the registration process, you will have the opportunity to select your preferred working group. This choice will determine your breakout room assignment during the meeting”. The options are:
- Group 1: Population Needs & Survey
- Group 2: Research & Quality of Life
- Group 3: Awareness, Advocacy & Communication
Previous Events and News
Rare on Air: Mental wellbeing with a rare disease
Rare on Air host Julien Poulain talks to Kym Winter, Founder and Chief Executive Officer of Rare Minds, and Matt Bolz-Johnson, Mental Health Lead and Healthcare Advisor at EURORDIS, to explore the often-overlooked topic of the mental wellbeing challenges commonly presented to those living with a rare disease.