Thank you to Norbert Hödebeck-Stuntebeck who gave the Pam Eisen Lecture at today's conference in Berlin. Norbert spoke about the future of care for people with PWS. The Pam Eisen Lecture holds a special place in our hearts here at IPWSO. In 2005, Pam Eisen, then President of IPWSO, recognised the need to integrate professional caregivers into the structure of the organisation as an increasingly visible and important part of the “world of care” for people with PWS. Over the next few years, she further developed this concept with committed caregivers from various countries, which ultimately resulted in the founding of IPWSO's Professional Providers and Caregivers Board (PPCB) during the 7th IPWSO conference in Taiwan. At each Caregivers’ Conference, we take the time to honour Pam’s legacy, reflecting on the tremendous impact she made for caregivers and for those with PWS we support. Norbert's lecture today briefly outlined the journey from the initial idea to the current standing of PWS caregivers within the wider PWS community. The main focus of his presentation highlighted ideas for future developments in the care of people with PWS. #PWSCare24
International Prader-Willi Syndrome Organisation (IPWSO)’s Post
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Baylab Manager @ Bayer UK | Educational Outreach, Lab Programmes Manager, Work Experience Coordinator, Societal Engagement, STEM Ambassador
Not only is it’s #britishscienceweek #bsw24 it’s also Healthcare Science Week too! Find out what my thoughts are on New Beginings and Vision in todays newsletter Academy for Healthcare Science!
A huge thank you to Emma Schierbaum for her contribution! Click below to read her article! 👇 https://buff.ly/3VcBJKl #HealthcareScienceWeek #AHCS #NewBeginnings
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More steps forward in working better together
We recently formed the region’s first hospital group with North Tees and Hartlepool NHS Foundation Trust and are delighted to reveal our new hospital group identity. We are University Hospitals Tees and we are Caring Better Together. Our two trusts remain as separate organisations- keeping their existing identities- but going forward, we will collectively be known as University Hospitals Tees. Over the last few months, our two organisations have been engaging with staff, patients, and service users to agree on the group name, branding, and strapline – Caring Better Together. This exciting development comes after years of joint working across the two trusts to ensure the best care for our patients and communities across the Tees Valley and beyond. To find out more about our hospital group visit: https://lnkd.in/e-2_NDP9
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💡 Partnership working is key in shifting focus to primary and community services. At the breakfast session of our event, Moving care closer to home, you'll hear from a real-life example and explore how lessons can be applied to other issues: https://lnkd.in/eB4W9YzU @RocheDiagnosticsUK
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Assistant Professor | FMUP, University of Porto. Secretary General | Portuguese Society of Radiology (SPRMN). Abdominal Radiologist | University Hospital Center S. João
UHN in Toronto moved from 4th to 3rd best hospital in the world, just behind #Mayoclinic and #clevelandclinic. What an amazing achievement… There are many insights that come to mind at the moment, but would like to share just one, which fills me with hope: I’ve been lucky enough to have worked for almost 10 years at 2 of the top 3 hospitals in the world (Mayo and UHN). Completely different organizations, mindset, processes, social/national circumstances, etc. Just completely different in almost any way. But both capable of achieving excellence at the highest level. Never think excellence is impossible! Let’s all do our best to contribute to the achievement of the highest possible level of excellence in our own environment! #medicine #medicina #excellence #excelencia #achievements #innovation #inovação #hardwork #team #trabalhoemequipe #esforço
UHN's Toronto General Hospital has climbed to third among the world's best hospitals in a global ranking from Newsweek magazine, its highest spot on the prestigious annual list! TGH's ranking behind only Mayo Clinic and Cleveland Clinic, both of the United States, makes it the top publicly-funded hospital in the world. "This recognition is only made possible because of the collective efforts of #TeamUHN – the dedicated staff, physicians, researchers, learners, philanthropists, Board members and volunteers who everyday are committed to our mission of building A Healthier World." Read more ➡ https://bit.ly/3OYAsCG
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There is strong evidence to suggest that patients in palliative and end of life care settings greatly value the opportunity to participate in research. In the latest article in our Hospice Thought Leadership series, Professor Jon Wadsley, Trustee at St Luke's - Sheffield's Hospice explores the importance of research to improve end of life care at hospices. He explains how patients can help drive the national agenda, as well as some of the barriers and enablers to research in the hospice setting. Read the article: https://lnkd.in/e2eyeaV4
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CEO ➥ Board Leadership/Partnership | Community Engagement & Education | Fund Development | Program Design | IT Infrastructure Management | Project Management
For those in the rare space actually living under a rock, the Matrix platform is one of the very few platforms that encourages and enables patient-owned data as a research resource and patient monitoring tool. Launched last year, we are thrilled to partner with Matrix on our Natural History Study that doubles as a IRB-governed Patient Registry. Learn more about Matrix in this episode of TalKBG. #KBGregistry #KBGsyndrome #KBGfdn #everylinkmatters #KBGresearch
In this episode learn more about the KBG Foundation Natural History Study with Across Healthcare CEO, Jason Colquitt, and KBG Foundation Chairman of the Board, Glenn Maughan. What makes the Matrix platform special and what features does it have in addition to The Study? #KBGRegistry #KBGNHS #KBGsyndrome #everylinkmatters #KBGfdn #AcrossHealthcare. To enroll in the study visit KBGFoundation.org. https://lnkd.in/eEEGmMwF
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Skilled communicator with 20 years' experience in reporting and storytelling, developing relationships, and engaging groups across various industries and nonprofit organizations.
A natural history study can be the gateway to learning so much about a rare disease like #KBGsyndrome. Here's a great conversation with Across Healthcare CEO Jason Colquitt and KBG Foundation Chairman Glenn Maughan about the KBG Foundation Natural History Study underway. #ANKRD11 #KBGRegistry #KBGNHS
In this episode learn more about the KBG Foundation Natural History Study with Across Healthcare CEO, Jason Colquitt, and KBG Foundation Chairman of the Board, Glenn Maughan. What makes the Matrix platform special and what features does it have in addition to The Study? #KBGRegistry #KBGNHS #KBGsyndrome #everylinkmatters #KBGfdn #AcrossHealthcare. To enroll in the study visit KBGFoundation.org. https://lnkd.in/eEEGmMwF
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One of the essential benefits of partnerships between hospitals and community-based organizations is the potential for more efficient use of resources. When organizations collaborate, they can pool their resources and expertise to build stronger neighborhoods and provide better care for the communities they serve. Let’s listen to and include our community members; they are context experts having a unique understanding of the world around them. #community #socialdeterminantsofhealth #healthcare
Community partnerships make a difference. When clinical healthcare professionals value community experiences, history and knowledge, involvement and participation increase. Let's prioritize our community members and partners. Hear more from Yejide Obisesan, Dr. Patrick O. Gee, Sandy Powell and Hope Ventricelli they discuss strategies to improve patient empowerment and community partnerships. Watch their empowering discussion here: https://bit.ly/4bUjAGt Session sponsored by CISCRP #BHMSpringSummitRewind24 #CommunityEngagment #ClinicalTrials
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Log my Care in action at UK Care Week 💚💙 We had a fantastic time on the Keynote Stage at UK Care Week today; thanks to everyone who attended! Here are some key takeaways from our discussion ✍️ With the new CQC assessment framework rolling out, compliance is crucial. A digital system helps you gather evidence to showcase the quality of care you provide across the six evidence categories (these are just a few examples!): 🎯 Outcomes of care: Tracking goals and measuring progress helps demonstrate a person-centred approach. 💻 Processes: Providing evidence of well-defined procedures, with audit trails of regular reviews. 📋 Feedback from partners: Clear documentation and responsiveness make positive impressions. 👀 Observations of care: Clear and detailed care logs help showcase the excellent care you deliver. 💬 Feedback from staff and leaders: An easy-to-use system is an investment in staff morale, feedback, and retention. 👥 People’s experiences: Sharing information with families through a dedicated portal ensures their involvement. For more insight into each of these categories, check out our brand-new guide through the link in the comments 🔗 #ukcareweek #cqcinspections #socialcare #digitalcaresystems
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In our latest blog post, SPCR Award holder Sophie Parks et al, discuss Community Pharmacy and General Practice Collaboration and Integration: what works, when and why? Read more: https://lnkd.in/eCXKiBYk
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