IPWSO

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IPWSO

IPWSO

@ipwso

International Prader-Willi Syndrome Organisation supporting PWS associations, caregivers, professionals, people with PWS and their families worldwide.

England, United Kingdom Joined Ekim 2013
446 Following638 Followers
IPWSO
IPWSO@ipwso·
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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IPWSO@ipwso·
Wishing you all a joyous end to 2024. We look forward to doing more wonderful work with our inspiring PWS community in 2025! Season's Greetings.
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IPWSO
IPWSO@ipwso·
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/su…
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IPWSO
IPWSO@ipwso·
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…
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IPWSO
IPWSO@ipwso·
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-c…
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IPWSO
IPWSO@ipwso·
We are hiring! Could you be our new CEO? Find out more about the role and application process at: ipwso.org/wp-content/upl…
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IPWSO@ipwso·
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-c…
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Yamada Yasunobu
Yamada Yasunobu@YamadaYasunobu·
I've been waiting for the announcement of the IPWSO International Conference! I plan to participate and will continue to prepare. We look forward to seeing you there. Thank you very much! #IPWSO #PWS #PraderWilliSyndrome
IPWSO@ipwso

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.com/29Zoqr

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IPWSO
IPWSO@ipwso·
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.com/29Zoqr
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IPWSO@ipwso·
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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IPWSO
IPWSO@ipwso·
@mylesjkelly Thank you Myles, and thank you for your participation and for inspiring us through lively discussions!
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Myles Kelly
Myles Kelly@mylesjkelly·
@ipwso And what a truly outstanding few days it was. Well done to the organisers for laying on such a successful conference.
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IPWSO
IPWSO@ipwso·
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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IPWSO retweeted
SolenoTx
SolenoTx@SolenoTx·
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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IPWSO
IPWSO@ipwso·
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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IPWSO@ipwso·
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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IPWSO@ipwso·
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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