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Mental Health & Wellbeing

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 conditions

Rare 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

1

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.

2

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.

3

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. 

Pilar 1:  Network & Community Engagement
- New Eurordis MN Partnership Network
- Community Engagement
- Advocacy in All Policy Areas
Pilar 2: Evidence Generation - Literature Review on Unmet Needs - Population Survey - Targeted Literature on Solutions
Pilar 3: Best Practice & Capacity Building - Peer Learning Programme - Sharing Best Practice Platform - Mental Health Communities Toolkits - Care Standards & Pathways
Pilar 4: Awareness & Communication - Public Awareness Campaign - Communication Strategy - Communication Activities & Tools
Pilar 5: Management & Stakeholder Engagement - Management, Monitoring & Impact - Engagement Strategy - Funding Opportunities

EURORDIS is establishing a new EURORDIS Mental Health & 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 Health & Wellbeing Partnership Network

A new EURORDIS Mental Health & Wellbeing Partnership Network was 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.

Upcoming Events

Open Webinar on the publication of the EURORDIS’ Outlined Position Paper:

The impact of rare conditions on the mental health and wellbeing of the rare disease community is widely recognised as significant and can be very severe. In our upcoming Outline Position Paper on Mental Health and Wellbeing, we explore the policy context and set out detailed policy recommendations both at European and at national levels. 

➡️ Register now!
🗓️ 10 July 2024
⏰ 4:30 PM to 5:30 PM CET

Previous Events

ECRD 2024 – Mental Health Session: No health wihtout mental health

The ECRD Interactive Session held on May 15 2024, “No Health without Mental Health! Let’s Co-Create a Mentally Healthy Toolkit”, featured insights from Kym Winter (Rareminds), Lucy McKay (Medics 4 Rare Diseases), Eva Shoeters (Rare Diseases Organization Belgium), An Jansen (UZA), and André Rietman (Erasmus University Rotterdam).

They delved into the psychological impacts of rare diseases, stressing the importance of community, belonging, and addressing systemic healthcare issues, with Lucy McKay highlighting that adequate mental healthcare “is a right that must be recognised” by professionals. The contributions noted the critical need for tailored psychosocial support not only for the rare disease patient community as a whole but also for specific rare disease patient populations.

Podcast episodes

EURORDIS Podcast: Rare on air

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. 

Contact persons

Matt Bolz-Johnson,
Mental Health Lead and Healthcare Advisor



Concha Mayo,
Mental Wellbeing Engagement Manager