Top Tweets for #PatientOrganisations
⏰ Last chance to register!
Tomorrow (4 March, 15:00–16:30 CET), join our #webinar on how #patientorganisations can influence the Union List of Critical Medicines and strengthen access to essential treatments.
Don’t miss it 👉 https://t.co/0p6DOrdaov
📢 New Webinar on how can patient groups help safeguard access to essential treatments?
Join us 4 March, 15:00–16:30 CET (online) to learn how to engage in consultations & ensure critical medicines remain available for people living with a rare disease.🔗https://t.co/0p6DOrdaov
Thank you, Commissioner @SKyriakidesEU, for your unwavering support to our movement and our work as #patientorganisations develop skills and capacity from advocacy for inclusion to participation and expertise to inclusive and person centred health systems.
Patient voices must continue to be heard if we want to build people-centered health systems.
I am grateful to @eupatientsforum for their excellent contributions to our work.
#HealthUnion
ADHD Europe is in Italy today! 🇮🇹
Nina Hoven (President) is joined by Andrea Bilbow @UK_ADHD - representing the patient voices of people living with ADHD at the research consortium General Meeting #patientorganisations
#AwarenessISKEY #ADHDAwareness
@PRIME_H2020 @EASOobesity
PRIME goes Italy! 🇮🇹
Today in Venice, Fernando Fernandez-Aranda just shared insights on "Management of eating disorders and obesity from transdiagnostic perspectives" at the "Eating Disorders: Building Momentum" session at #ECO20204 by @EASOobesity. 👏
Time to put patients at the 💚 of EU politics.
@eupatientsforum manifesto gives an outlook on the path towards a truly participatory, democratic, and impactful involvement of #patientorganisations!
We signed the petition. Will you?
https://t.co/vAldpxIBxn
#Vote4Patients
🆕New publication by Prof. Marisa Miraldo @mmiraldo @imperialcollege &Arianna Gentilini @agentilini_ from the department on the role of #patientorganisations in advancing #pharmaceuticalinnovation within the European #raredisease landscape.
Read in full➡️https://t.co/l8x6bBuFdG
Day 2 @eupatients training & got to present our groups feedback on an off label case study & then we had a very interesting afternoon case study on how #patientorganisations can support patient self reporting of #medication #adverseadvents #WeAreEUPATIFellows #CreatingChange
💻 #ProstatePIONEER: Curious about who we are? PIONEER is a public−private partnership for #bigdata in #prostatecancer, working with >100 partners, including #patientorganisations, to conduct research across the disease. Visit our website:
👇👇👇
https://t.co/oZcOdl7tlt
📢In our new @socscimed paper (w/ @mmiraldo) we examine the role of #patientorganisations in advancing #pharmaceuticalinnovation within the European #raredisease landscape.
Read the full article here https://t.co/6j7shGJg4t & key findings below 👇🏻
(1/x)
the National Consultation for an effective policy response. Together as a diabetes community, we stand firm against the onslaught of ultra-processed foods and their promotion
#Diabetes #PatientOrganisations #NothingAboutUsWithoutUs #UltraProcessedFoods #junkfood #advertising
In July, The Observer published an article implying that #PharmaceuticalFunding of #PatientOrganisations leads to those groups acting as “puppets for the industry”.
“To say that we find this problematic is an understatement.”
Read our statement: 👇
https://t.co/3KKipT8xiw
Have you seen our new #HTA4Patients project page🧐
Our goal is to empower #patients & #patientorganisations to play a vital role in the implementation of the new framework for Health Technology Assessment #HTA💯
Watch this space 👀 https://t.co/hkftJv4r9h
#HTA4Patients #HTA
🤔 What are #patientorganisations and individual patient advocates' perceptions of and ideas about #AI applications in healthcare?
Last Spring, EPF set out a #survey on exactly this topic. Today, we share the results.
Have a look: https://t.co/2jMQclrowP
Here at #SIMPATHIC European project kick off🤓
22 #partners,#researchinstitutions & #patientorganisations working together🤩
Why? To accelerate #drugrepurposing for rare neurological, neurometabolic & neuromuscular disorders🙌
More on #drugrepurposing👉https://t.co/V5wzN4hSQZ
On feeding back to #patientorganisations the impact of their contribution 👉🏻 "#patients want to understand how it is used. If they don't, we run the risk they withdraw from healthcare #decisionmaking processes". #PEOF 2023 #patientinvolvement #patientvoice #patientengagement
💡Exciting outcomes from Stakeholder-Specific Sessions #PEOF D1! Insights summarized by Rebecca Vermeulen (@Roche), Randall Ruta (@NHCouncil), Neil Bertelsen (@HTAiOrg), Dr. Stuart Faulkner (@UniofOxford). Stay tuned for updates on #patientengagement and actionable strategies!⬇
On #patientorganisations and their roles, @Anca4health from @eupatientsforum at #PEOF 2023 👉🏻 "We are not here to be recipients of anybody's charity but to serve our community and improve outcomes for #patients". #patientinvolvememt #patientvoice #patientadvocacy
ELLyE #patientadvocate Pierre Aumont comments that #patientorganisations are unclear about the use of #singlearmtrials. Francesco Pignatti @EMA_News says regulators probably should work with patients to better communicate their acceptability in specific circumstances #EHA2023
Last Friday at @IADPO's #GSElevate2023: a conference for dermatology patient organisation leaders, EPF’s Elena Balestra and Borislava Ananieva hosted a workshop on engaging young people in #patientorganisations.
📍@epfyouthgroup
#patientorganisations are greatly impressed with Dr @drenabulele new president of @medwma & his amazing #humanisedhealthcare & a very compassionate approach to #patientsafety #GlobalPatientSafetyActionPlan A wind of change has began blowing through the healthcare systems! #WHA76
Our #digitalhealth module launch webinar is live 🙌
Now hearing why #digitalhealth is so important from various perspectives👍
From #patients to #patientorganisations, #healthcare providers & EUPATI National Platforms #ENPs - #digitalhealth leads to better healthcare 💯
#EUPATI
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