Help us make a difference and raise awareness across the world in areas where there may be limited information and knowledge about PWS. With your help we can work to ensure that every community has access to free diagnosis, helpful information and local support.
Free diagnosis around the world
One of the most important parts of our work is providing free PWS diagnoses to families in countries where this is not usually available.
IPWSO underwrites approximately 60 diagnoses a year, providing families with the information they need to move forward with their lives. This knowledge in turn helps them in accessing the support they require and enabling the better management of this unique syndrome.
The laboratory we use is in Vicenza, Italy and part of B.I.R.D, the Baschirotto Institute of Rare Disorders. The process is simple; a blood-spot on a piece of blotting paper sent to the laboratory is enough to provide results. Find out more about this free diagnostic service here.
IPWSO translates material into many different languages. Our "Medical Alerts" booklet is available to download in 16 different languages. Other translations are available on our Family Care page. Translations are so important to families where there are no PWS associations and little support in the way of information, knowledge or management skills. IPWSO provides this material, and ongoing one-on-one support wherever needed.
IPWSO provides scholarships to its international PWS Conferences every three years. Applications are accepted from all backgrounds - professionals and parents alike, allowing those who might not have been able to attend, access to a network of professionals and family support and a huge resource of information to take back to their countries.
Our next conference will be held in Ireland, in 2022.
As an international umbrella organisation we support all country PWS associations, and for all countries where there are no formal associations, we support medical and parent delegates as part of our global community. IPWSO has contacts in over 100 countries and is a world-wide parent-led support organisation. We also offer free diagnosis for PWS in countries where this is not available.
How you can help
Support our work
Donations can be made through our "iDonate" site with a selection and choice of amounts, or monthly donations. IPWSO is reliant on the generosity and good-heartedness of its donors. We appreciate your generosity and whole-heartedly thank you!
Give in Memory
Maybe you would like to make a donation towards our work, in memory of a loved one. This is one of the most powerful ways to remember a person by, knowing that your contribution will go towards helping others in countries where families are desperate for help. If you wish to share the story of your loved one please contact us.
Connect with us
Join our community and find out more about work, your stories, the latest PWS research, advice and support around the world! Follow us on our social media channels and sign up to our e-newsletter for regular useful updates.
Get in touch and let us know how we can help you with any enquiry about Prader-Willi syndrome and how our organisation works.