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IPWSO

@ipwso

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

 England, United Kingdom
ipwso.org
Joined October 2013
  • Tweets886
  • Following442
  • Followers635
253Media
Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)Photo by IPWSO (@ipwso)
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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Replying to @ipwso
Riveting talks by the 3 pharma representatives. Interesting discussion about case for management versus treatment. Proud to represent @PWSAUK
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🦉Knowledge is power. We are happy to offer free ebooks and videos to help you get the information you need about PWS. #PraderWilli fpwr.us/4aTnEqn

Prader Willi Syndrome Resources

These free resources provide reliable information about Prader-Willi syndrome. PWS parents and researchers created these ebooks, videos and fact sheets.

fpwr.org
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I"m supporting this Awareness Day campaign which I launched with @ESEndocrinology 3 years ago. There are small simple steps to improve your hormone health - which will help you feel well and healthy? Find out more at europeanhormoneday.org #BecauseHormonesMatter
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Pleased to have contributed to this new paper showing benefits of specialist PWS residential care for weight loss and problematic behaviours from an international series. link.springer.com/article/10… @ipwso @PWSAUK @PWSAUSA @fpwr @ImperialMed @ImperialBrains @ImpPsych
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IPWSO retweeted
IRDiRC (@irdirc) profile picture
IRDiRC@irdirc7 Sep 2023
New IRDiRC Publication: @irdirc's Chrysalis Task Force on Making Rare Disease Research Attractive to Companies 📝Check out the article at doi.org/10.1177/263300402311…
Image from IRDiRC (@irdirc)
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Get ready for Dubai! #ICE2024 is accepting abstracts for the 2024 meeting in Dubai. "Join us for the 'Future of Endocrinology.'" lnkd.in/gFeQ8uuj

LinkedIn

This link will take you to a page that’s not on LinkedIn

lnkd.in
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📢#Registration for IAPO's 10th Global Patients Congress #GPC2023 is now open! Theme: ''Innovative patient partnerships at the heart of global health advancement" 📅 19 - 20 May 2023 in #Geneva, #Switzerland as a hybrid event. Register: bit.ly/3FDPqcy
Image from IAPO (@IAPOvoice)
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We had some amazing projects from last year’s Health Equity in RARE grant winners. It isn’t too late to apply! Apply now through April 7th. To apply or to see if you qualify and learn more, click: go.globalgenes.org/HEgr-tw #GlobalGenes #CareAboutRare #HealthEquity #RareDisease
We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

ALT We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

ALT We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

ALT We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

ALT We had some amazing projects from last year’s grant winners outlining how they improved outreach strategies and addressed challenges that affect underserved and underrepresented people within the rare disease patient community. It isn’t too late to apply for a chance to be part of this year’s group of selected projects! Applications are open now through April 7th. To apply: https://go.globalgenes.org/HEgr-tw

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Registration is now open for #ECO2023! Early bird discounts are available. Programme details have now been published online; visit the website for full details. eco2023.org/?p=home #obesity @EASOpresident
Image from EASO (@EASOobesity)
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We have created lots of useful videos about different aspects of #PraderWilliSyndrome to share with family, friends and professionals. youtube.com/c/ipwso #RareDiseaseDay #tuesdaytakeover #RDD2023 @ipwso
Image from RARE Revolution Magazine® (@RareRevolutionM)
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#PraderWilliSyndrome is a complex genetic condition caused by a lack of expression of one or more genes in a specific region of #chromosome15. ncbi.nlm.nih.gov/sites/books… #tuesdaytakeover #RDD2023 @ipwso
Image from RARE Revolution Magazine® (@RareRevolutionM)
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On #RareDiseaseDay we celebrate the strength of our community and the issues that really matter to people with #PraderWilliSyndrome and their families. People with rare diseases can achieve their goals and live happy and productive lives. ipwso.org/how-we-can-help/ @ipwso
Image from RARE Revolution Magazine® (@RareRevolutionM)
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Thank you for joining @ipwso to celebrate #RareDiseaseDay! To find out more about #PraderWilliSyndrome do give our socials a follow and check our online resources. ipwso.org/ #tuesdaytakeover #RDD2023
Image from RARE Revolution Magazine® (@RareRevolutionM)
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Tu hijo tiene dificultades en su colegio? No te pierdas nuestra conferencia virtual. Puedes acceder a ella en cualquier momento desde nuestro portal oficial: acspw.org/conf-educacion #ASCPW #SPW #síndrome #conferenciaspw #asociacioncolombianaspw #enseñanzas
Image from Asociación Colombiana Síndrome de Prader-Willi (@acspraderwilli)
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IPWSO retweeted
ESPE (@EuroSPE) profile picture
ESPE@EuroSPE1 Feb 2023
Together with the @ESEndocrinology, we hope to better understand the transition from paediatric to adult care in patients with #endocrine conditions. Please help us gain valuable insight by completing a short, 5-minute survey: ese-hormones.org/news/ese-ne…    #PeadiatricEndocrinology
Image from ESPE (@EuroSPE)
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IPWSO retweeted
ESPE (@EuroSPE) profile picture
ESPE@EuroSPE9 Jan 2023
The 11th International Meeting in #PediatricEndocrinology will be held on 4-7 March 2023 in Buenos Aires, Argentina with the theme #EqualOpportunities in #Pediatric #Endocrine care around the world. In-person and on-demand registration is available: impe2023.org/registration/
Image from ESPE (@EuroSPE)
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Join us in celebrating International 15q Day! Together with Angelman Syndrome Foundation and the Foundation for Prader-Willi Research, we are raising awareness of the similarities between Dup15q Syndrome, Angelman and Prader-Willi Syndromes. #15qDay #ASF #PWS #Dup15q #Believe
Image from Dup15q Alliance (@dup15q)
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🌎The Global PWS Registry is a comprehensive and secure database that is used by scientists and researchers hoping to discover new therapies to make our lives better. #PraderWilli fpwr.us/3TMGXJ7
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IPWSO retweeted
ESPE (@EuroSPE) profile picture
ESPE@EuroSPE14 Nov 2022
Today is #WorldDiabetesDay! We join @IntDiabetesFed and @IDFEuropeBXL in calling on EU and national decision-makers to improve access to diabetes education for children as well as adults. @WHO @WDD #EducationToProtect #WorldDiabetesDay ow.ly/sgv850LCcEF
Image from ESPE (@EuroSPE)
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