Minister Roderick O'Gorman launches report on the Joint National Pilot of the Health Service Executive and the Prader Willi Syndrome Association of Ireland

April 3 2024


On Thursday 28 March 2024, HSE National Disability Operations Community Services and DFI Member Organisation Prader-Willi Syndrome Association of Ireland (PWSAI) published a report on the Joint National Pilot of the Health Service Executive and the Prader Willi Syndrome Association of Ireland in the Aishling Hotel in Dublin. 

The report was launched by Minister for Children, Equality, Disability, Integration and Youth Roderic O’Gorman. Also in attendance were Bernard O’Regan Head of Operations, Disability Services HSE, PWSAI Chairperson Rory Tierney and Gary Brennan National Development Manager PWSAI. DFI CEO John Dolan was in attendance and is pictured here with Rory Tierney, Emma Walsh Tierney and their son Henry Tierney and Gary Brennan. 

Speaking at the launch Minister O'Gorman said he was honoured to be invited to be invited to launch the report which, centres the voices and  perspectives of those directly impacted by PWS to offer an understanding of the lived experience of those affected and sets out realistic ways that services can improve.

Chairperson Rory Tierney spoke of the importance of implementing the recommendations in the report. He also spoke about the power this report will give families in advocating for their children’s futures. 

Bernard O’Regan said that the HSE will be establishing an implementation committee and a monitoring group to get the recommendations acted upon from this report. 

Read the report here. 

What is PWS? 

Prader-Willi syndrome is a genetic disorder, a condition caused by an error in one or more genes. Although the exact mechanisms responsible for Prader-Willi syndrome haven't been identified, the problem lies in the genes located in a particular region of chromosome 15.

With the exception of genes related to sex characteristics, all genes come in pairs — one copy inherited from your father (paternal gene) and one copy inherited from your mother (maternal gene). For most types of genes, if one copy is "active," or expressed, then the other copy also is expressed, although it's normal for some types of genes to act alone.

Prader-Willi syndrome occurs because certain paternal genes that should be expressed are not for one of these reasons:

  • Paternal genes on chromosome 15 are missing.
  • The child inherited two copies of chromosome 15 from the mother and no chromosome 15 from the father.
  • There's some error or defect in paternal genes on chromosome 15.

In Prader-Willi syndrome, a defect on chromosome 15 disrupts the normal functions of a portion of the brain called the hypothalamus, which controls the release of hormones. A hypothalamus that isn't functioning properly can interfere with processes that result in problems with hunger, growth, sexual development, body temperature, mood and sleep.

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