Press release

New report from HSE and Prader-Willi Association of Ireland identifies supports for people living with Prader-Willi Syndrome (PWS) and their families

Published: 28 March 2024

Updated: 9 April 2024

Today the HSE and Prader-Willi Syndrome Association of Ireland (PWSAI), have launched a new report exploring current health services and supports for people living with Prader-Willi Syndrome in Ireland. The report details eight recommendations for the development of high quality, safe and effective health and social care services for people living with PWS.

The report details eight recommendations:

  • quality and delivery of health and social care services
  • respite services
  • residential services
  • day services (new direction)
  • acute services
  • mental health services
  • educational and lifelong supports for people with PWS
  • psychological supports for families.

Launching the report, Roderic O'Gorman TD, Minister for Children, Equality, Disability, Integration and Youth, commented:

"This report centres on the voices and perspectives of those directly impacted by PWS to offer an authentic understanding of the lived experience of those affected and sets out ways that services can improve those experiences. I want to thank all the contributors and the Prader-Willi Syndrome Association of Ireland for their ongoing work to improve the lives of people with Prader-Willi Syndrome.”

Rory Tierney, Chairperson, PWSAI said:

“This report represents the next phase in our development, embracing a holistic life approach to support people with PWS and their families across all stages of life. This report serves as a powerful advocate for individuals with PWS and their families, empowering them to comprehend their needs and advocate for the highest standards of care and well-being from service providers, while also highlighting areas for improvement in the future.”

Bernard O’Regan, Head of Operations for Disability Services, HSE added:

“I welcome the publication of this comprehensive report. The approach taken by the joint working group, contributes valuable insights that clearly articulate how to enhance the quality of support for individuals and their families affected by PWS. PWSAI’s National Development Manager funded by the HSE will drive the implementation of the recommendations of this report.”

The report combines evidence-based research, family and caregiver experiences, as well as voices of people living with PWS. This is the first time a focused approach has been taken to the needs and experiences of people with this complex genetic disorder, and will greatly assist the HSE and other service providers to understand the specific needs of people with PWS and their families.

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