Share your story
Help us make a difference and raise awareness across the world in areas where there may be limited information and knowledge about PWS.
How will your story be used?
Sharing stories of those with PWS or from the perspective of their families, carers and doctors is hugely important in helping IPWSO to raise awareness around the world and reach people where vital information may not be available.
Your story will help other families and carers to fully understand real life experiences, expectations and support available worldwide. We shall use your story within our blog and share across our social media platforms to build upon our PWS community.
How to get involved
Send us your story by filling in the form below. Be as creative as you wish – write a blog post or just let us know some key experiences and points you would wish to share with the wider community. If you can share photos or videos too that would be very helpful, please complete our photo consent form.
Some ideas on topics to get you started are:
• Your perspective: a day in the life
• Your nutrition plan for a child with PWS
• Professional advice on support
• Fundraising experiences and challenges
• Caring for an adult with PWS
< Back to Get Involved
International Community
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
Free Diagnosis
If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing.
Find support in my country
We have contacts in many countries and regions around the world.