Parents Programme

The Parents Conference offers a wealth of opportunities to help you, your loved one living with PWS, your family and also other families in your country.  It is a time to reflect, a time to devleop new strategies, and coping methods, a time to receive support and in return give support by sharing your experiences.  It’s a time to reconnect with old friends and develop new relationships.  We’re all in this together and together in Ireland we can grow and strengthen our global community!

We’ll be exploring the following topics:

• current knowledge and research
• the genetics of PWS
• supporting children and families in the early years
• supporting the child in the school environment
• supporting teenagers and adults
• food security and problem behaviours
• orthopaedics – typical treatments and what needs to be monitored
• sleep patterns and disorders
• keeping children, teenagers and adults healthy: nutrition and physical activity
• behavioural challenges
• mental health and illness
• growth hormone treatment and other hormone deficiencies
• health and medical issues: gastro-intestinal problems, obesity management, oedema, oral health and orthodontics
• Body functions – stimulation, sensory integration, hygiene and body perception
• Autism and ADHD and other related symptoms of PWS
• Multidisciplinary teams and good practice in integrating health and social care.

Members of the Parents Conference Planning Committee:

Amalia Balart, Susanne Blichfeldt, Jackie Gill, Verena Gutmann, Yvonne Rochford.

Parents Programme and Booklet of Proceedings

Download the Parents Programme Overview (PDF).

Download the Parents Booklet of Proceedings (PDF).

The Conference Planning Committee reserve the right to amend the content and timings of the programme, if deemed necessary.

*Please note all times are in BST.

Speaker Information

Please bring your presentation on a USB drive. You will find the technicians in the
Allegro Cafe, University Concert Hall Building, at the following times:

Wednesday 6 July – 14:00 – 16:00

Thursday 7 July – 08:00 – 17:00

Friday 8 July – 08:00 – 17:00

Saturday 9 July – 08:00 – 16:00

Sunday 10 July – 08:30 – 16:00

In the interests of time,  you will not be permitted to use your own laptop.

If you have media files as part of a PowerPoint presentation, please make sure that these files are saved in the same folder as the PowerPoint file.

Set your presentation slide size to a widescreen (16:9) aspect ratio

We recommend that you arrive at the venue in good time so your presentation can be tested to make sure it will behave as you expect.

If you are unable to attend (or to send a substitute) to deliver your presentation, please let us know as soon as possible at conference@ipwso.org.