International Prader-Willi Syndrome Organisation supporting PWS associations, caregivers, professionals, people with PWS and their families worldwide.
Joined October 2013
- Tweets 886
- Following 443
- Followers 636
- Likes 826
253 Photos and videos
We are delighted to announce that IPWSO will be attending the @menararedisease Congress on 17–20 April 2025. We look forward to sharing information about PWS and strengthening our collaboration with those supporting people with PWS and rare diseases in the region.
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We're looking forward to welcoming Alexandra Heumber Perry, CEO of @rarediseasesint at our upcoming Meeting. Alexandra will present on Access to Therapies for Rare Disorders in Low and Middle Income Countries. Register at: ipwso.org/news-events/summit…
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A preprint of a new study on COVID hospital stays for people with PWS in the US is now available. A summary of the study with link to the preprint has been prepared by @fpwr and is available here: fpwr.org/blog/new-study-high…
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Just 10 days to go! Sign up today to learn more about potential new treatments for Prader-Willi Syndrome from 6 companies leading the way in PWS research.
Register free of charge here: ipwso.org/research-and-clini…
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We are hiring! Could you be our new CEO?
Find out more about the role and application process at: ipwso.org/wp-content/uploads…
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Applications are open for the 2nd round of funding for PWS events and conferences and also for small projects in 2024.
With the amazing support of @friendsofipwso, we are able to provide support for small projects across the world. ipwso.org/how-we-can-help/su…
#praderwilli #funding
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Do you want to learn more about Research and Clinical Trials for Prader-Willi syndrome? Registration has now opened for our free online Research and Clinical Trials meeting on September 5th at 5pm, UK time: ipwso.org/research-and-clini…
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Applications are open for the 2nd round of funding for PWS events and conferences and also for small projects in 2024.
With the amazing support of @friendsofipwso, we are able to provide support for small projects across the world. ipwso.org/how-we-can-help/su…
#praderwilli #funding
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We are delighted to partner with PWSA | USA and FPWR to bring you the 2025 International Prader-Willi Syndrome Conference in Phoenix, Arizona in the USA. Registration is now open at: pwsausaevents.cventevents.co…
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An international research project on the experiences of families with PWS is being conducted by Prof. Brian Hughes and Kristina Micallef Pule. Their aim is to gather information about family life and the challenges that can arise for family members. pws-research.com/ #PWS
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We are nearly coming to the end of PWS Awareness Month! Thank you for all your shares and likes, it really makes a difference in raising awareness and getting people with PWS seen!
Still time to donate here: ipwso.org/make-a-donation/
#PWS #PWSAwareness #donatetoday #praderwilli
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The #PraderWilliSyndrome community is made up of diverse individuals, each with their own dreams, interests, and talents to share. During #PWSAwarenessMonth, raise awareness and share messages of hope for this amazing group of people. Support4PWS.com
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Chair of IPWSO Professional Providers and Caregivers Board, Lynn Garrick, thanks everyone for attending our caregivers conference. Thank you for participating, networking, learning and sharing best practices. #PWSCare24 #PWS #Praderwilli #conference #community #family
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Our final panel discussion allows us to discuss and share ideas about how we can improve communities, and support people with PWS. Here at IPWSO, we strive towards building communities, offering support and information when needed. #PWS #PWSAwareness #PWSCare24
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Now we have an opportunity for YOUR medical questions to be answered by our team of advisors, who are on hand to help. #PWS #PWSAwareness #PWScare24
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We welcome discussion and peer networking here at #PWSCare24 - It's great to welcome so many delegates to our panel discussion on Self Determination and Self Control. #PWS #Praderwilli #PWScare24 #praderwili
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This afternoon we are grateful to host such a diverse panel of specialists, discussing Self Determination and Self Control. #PWS #Praderwilli #PWScare24
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Huge thanks to @friendsofipwso for sponsoring IPWSO travel scholarships, and enabling delegates from diverse backgrounds to attend our conferences. We welcome Paula Arce Sanz, Bjørn Christensen, Saoirse Kavanagh, Maria Benedekova and Van Dinh Thi Thanh. #PWScare24 #praderwilli
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We are hearing about the great achievements and plans from the PWS Competence Center in Austria. #PWS #Futureplans #PWSAwareness #PWScare24
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