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…need for a vote amongst the membership. We are delighted to announce that the 2025 conference will be held in the USA in partnership with PWSA | USA. We are keen to tell our members more about the bid and what the conference will be like. PWSA | USA are now in the build up to their own 2023 convention, therefore we will arrange a meeting to present the details later in the year. …
…to make good decisions, for example about bath temperature or what clothes to wear when the weather changes. Our Famcare Board agreed this was an important issue for them to investigate and this has resulted in their new factsheet, Too hot, Too cold: Abnormal temperature sensation. In this guide the Famcare Board outline some of the main issues that a person with PWS might need support with, these can include: Setting a safe temperature in…
…and Adolescent Endocrinology (ASPAE) and the International Prader-Willi Syndrome Organisation (IPWSO) invite you to a webinar to learn more about the signs and symptoms of the syndrome, diagnosis and management. The Webinar will be held at 5pm WAT on Thursday 8th September 2022 (the meeting will last 60 mins). To register please use this link: https://us06web.zoom.us/meeting/register/tZUocu6orTMtHt3aB1tJ9rVdqYBUmkJdFPZP If you have any questions in advance or following the event, do contact Agnes Hoctor at IPWSO on office@ipwso.org….
…at the University of Pretoria, South Africa on identifying/diagnosing and supporting families in Africa, drawing on her particular experiences from South Africa. Engela was joined by Karin Clarke from Prader-Willi Syndrome Support (South Africa). The presentations were followed by a question and answer session. A recording of the webinar is now available below. If you have any questions about the care and treatment of people with PWS please do not hesitate to contact us. …
contributed by Georgina Loughnan Georgina Loughnan (IPWSO Board member) Constanze Laemmer (paediatrician and nutritionist), Norbert Hodebeck-Stuntebeck (from the Professional Provider Caregiver Board) visited Hanoi, Vietnam, to present a one-day Prader-Willi Syndrome programme on both Saturday 12th and Sunday 13th October, 2019, at the request of Do Thuy Lan, the psychiatrist who established the Morning Star Centre for children with disabilities and who won a scholarship to attend the PPCB Conference in Munich last year. The…
…wrote the book “The Smile Thief”, published in 2017, which is the testimony of a family with a special child. She has been married for over 40 years to Mauricio Sánchez with whom she has four children; the youngest, Carlos Iván, has Prader-Willi syndrome. She has been President of the Asociación Colombiana Síndrome de Prader-Willi since 2019. María was part of the organising committee of international symposiums on PWS in Colombia in 2019 and 2021….
Member, Clinical and Scientific Advisory Board Jorgelina Stegmann, MD, MBA, is President of the Fundacion SPINE, a centre for specialist treatment and research into Rare Diseases, specifically in PWS, in Argentina and she is Co-Founder of RDCom (Rare Diseases Community)….
Member of the Advisory Group on “Research on specialist services for people with PWS”. Mark Lister is a Board Certified Assistant Behaviour Analyst who has 30 years of experience working with individuals with Prader-Willi syndrome, designing and managing, both residential and behaviour management programs. Mark was one of the founders of the Arc of Alachua County’s PWS residential program in Florida, USA. Currently the Arc is serving 65 individuals with PWS and is the only…
Trustee Ph.D., adult education, Catholic University of Eichstätt-Ingolstadt, 2004. Studies of German and English at the Novosibirsk State Pedagogical University, 1995. Department Manager of special services for 73 people with Prader-Willi Syndrome at Regens Wagner Absberg from 2007 till 2021. Regens Wagner Absberg is an institution for adult people with disabilities offering facilities for living and working. For 20 years the institution has offered a special treatment for people with Prader-Willi Syndrome. Since this time…
Find useful guides, research and information to help families manage PWS.
The latest medical and scientific research and information, plus guides into common medical issues affecting people with 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.