International Prader-Willi Syndrome Organisation

During this most difficult year we know that families around the world need support and information about living with PWS more than ever.

IPWSO CEO Marguerite Hughes would like to ask for your help:

Dear Friends,

As you will know, one of the key roles of IPWSO is to reach out to families in parts of the world where there is no PWS association and little infrastructure to support families living with a child or adult with PWS.

It's not just families who need information, it is also health professionals, caregivers and teachers.

This year we have responded to many requests to our helpline from countries including Algeria, Bolivia, Latvia, Belarus, Lebanon, Kosovo, Guatemala and beyond. 

People ask us how they can support their newly diagnosed child, find other families in their country, when surgery is appropriate, how to access growth hormone and what questions they should be asking their doctors.

You may have asked many of these questions yourself! I know I did! But in many parts of the world the answers are not simple to find and that is where IPWSO can play an important role in supporting people.

I am asking today if you would consider giving a donation or regular gift to enable us to continue to provide this vital service to families and the people who work with them around the world.

Thank you in advance for your generosity,

Marguerite Hughes