Be a star for IPWSO! - International Prader-Willi Syndrome Organisation

Please support our Advice Line Appeal.

Help us be there for people with PWS in parts of the world with little support.

This month we’re raising funds to help people with PWS access our vital advice line.

Your donations will provide essential life-saving advice for people with PWS.

Many parts of the world have little or no access to diagnosis and treatment. These are countries where there is little local knowledge and support about the care and treatment of people with PWS.

We want to change that. We’re working to ensure everyone with PWS across the world has equal access to diagnosis, treatment, research and community.

That’s why our advice line is open to anyone with a question about PWS, and most questions come from people living in countries without a PWS association.

Many questions come from parents or siblings who are desperate to help a loved one whose weight has slipped out of control which has left them with life-threatening consequences. Without intervention or change, some of these people are at risk of early death. Sadly, we hear about families being given incorrect or dangerous medical advice about stomach surgery and obesity medications.

With your support, when families contact us, we will be able to give them clear and simple advice about how to manage and lose weight safely through diet and exercise, advice that is tailored to the needs of a person with PWS. Our advice is provided by experts who have many years of experience working with people with PWS.

You can help us be there for people with PWS.

IPWSO was founded to share knowledge about PWS around the world, our advice line is making a real difference to the lives of people living with PWS in very challenging conditions, without the healthcare that many of us rely on and take for granted.

Ozgur, a parent from Turkey told us: "Prader-Willi syndrome is not well known in Turkey. Many doctors here have not heard of it and so it is difficult to get the information we need to support our daughter. I found IPWSO online and asked them questions about my daughter's care and treatment. Their experts were happy to help and their advice has been very useful as well as reassuring. My daughter is doing well."

Your donation of €30 will help towards the running costs of our PWS advice line.

Without our advice line many families would have no one to turn to. We may not be able to solve all the problems we hear about, but we can offer information, kindness and support so that people know they are not alone.

Please support our urgent advice line appeal today.