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Mental health open webinar: What are the building blocks for Psychosocial Care?

May 2024

EURORDIS 4th Mental Health & Wellbeing Webinar

Psychosocial care for people living with rare conditions requires a flexible and tailored approach that addresses their specific needs at that moment in their journey, taking into consideration their age and stage of development, their stage of treatment and prognosis, as well as the support system around them, and their current social and financial situation. Also, these factors are needed to be considered in order to provide the right care and support needed and reduce the psychosocial risk factors.

Whilst there is an intrinsic relationship between the medical complexity of rare conditions on physical health and mental wellbeing, the psychological and emotional needs of people living with rare diseases are reported by the rare disease community to be the missing piece of their medical care. Evidence shows that up to 85% of people living with rare diseases were not offered or received sufficient psychological support in an Expert Centre (Courbier et al. 2017; Nunn et al. 2017).

The high level of unmet psychosocial needs and increased vulnerability of people living with a rare condition were acknowledged in the recent UN General Assembly’s Resolution that call on UN Member States to develop “to implement effective programmes to promote mental health and psychosocial support for persons living with a rare condition, and to promote policies and programmes that enhance the well-being of their families and caregivers” (A/RES/76/132, 2021).

But what does psychosocial care look like? Is this more about accessing existing mental health services enhancing medical care to be more psychologically informed? The webinar will explore through an interview format, the core components of care needed to address the psychosocial needs of people living with a rare disease.

Following an interview-based discussion, participants will be actively engaged to set out from their perspectives what good psychosocial care looks like for them.


11.30 – 11.35Welcome and opening remarksTBC
11.35 – 12.00Interview:
Psychosocial care. What does it look like, and
what are its building blocks?
Matt Bolz-Johnson, EURORDIS interviewing
Thomas Pletschko, Clinical Psychologists at
the Institute of Psychology of Development and Education, Vienna University
12.00 – 12.25Questions & AnswersAll
12.25 – 12.30Final & Closing RemarksTBC

The insights gained from the webinar will be used to inform the development of EURORDIS’ Outline Position Paper on Mental Health, and shape our recommendations and standards that can be utilised by patient groups to advocate for their regional and national authorities, when they take steps to honour the commitment the UN GA call for psychosocial care and programmes to be developed for PLWRD in each country.

💬 Mental health open webinar: What are the building blocks for Psychosocial Care?
➡️ Register now!
🗓️ 21 May 2024
⏰ 11h30 – 12h30 CET