📣 Webinar today - don’t miss it!

Join the FIBROTARGET–IFCCA webinar to explore how fibrosis research and patient voices can lead to real improvements in IBD care.

🗓️ Today | 2 April 2026
🕕 18:00–19:00 CEST | 🌐 Online

Register now: https://loom.ly/RuUAO_M
#IBD #Fibrosis #PatientVoice

📣 Join our Sickle Cell Engagement Event

📅 16 May 2026 | 🕛 12–3pm
📍 St Thomas’ Hospital or online

Share your experiences and help shape better care.

Register:
In person: buff.ly/BGDZQVz

Virtual: buff.ly/Cith4BM

#SickleCell #PatientVoice #LondonEvents

📣 This week: FIBROTARGET–IFCCA webinar

Living with IBD fibrosis? Join this free online webinar to explore how research and patient voices can lead to real improvements in care and quality of life.

📆 2 Apr • 🌐 Online
Register➡️: https://loom.ly/RuUAO_M

#IBD #Fibrosis #PatientVoice

Today at RCSI, our Patient Consultants Committee are taking part in comms training with journalist Claire O’Connell.

Supporting patients to share their stories with confidence and clarity – because the patient voice matters.

Thanks to Daiichi Sankyo for their support.

#CancerTrials #PatientVoice

Shift Happens—but how is it affecting your healthcare?
Watch here: youtu.be/NYMVVqDow60

Stay connected by following us on all platforms here:
linktr.ee/NPAF

#HealthcareCosts #PatientVoice #CommunitySupport #PolicyConsortium

@janetmarx.bsky.social

Transparency is not risk free. But neither is restricted access - Healthy Debate Patients should not have to file formal requests to understand their own care, and they should not be excluded from conversations that shape their health and lives.

Canadians deserve open notes and access to their health data.

This article in @healthydebate.bsky.social argues that patients will seek out their health data and deserve accessibly written notes.

Read the full article: healthydebate.ca/2026/03/topi...

#PatientVoice #PatientEngagement

Your story matters. By sharing your experience in the Global Patient Survey on Lymphomas & CLL, you help drive better care, smarter research and real change worldwide.

Take part today: bit.ly/LCSurveyInfo

#GlobalPatientSurvey #PatientExperience #Lymphoma #CLL #PatientVoice

Why I Decided to Share My Cancer Surgery With Times Readers

It takes courage to let the world into your operating theatre. A Times editor explains why he chose to share his kidney cancer surgery with readers, and what radical transparency can do for others facing diagnosis. #CancerStories #PatientVoice #TCSC
www.nytimes.com/2026/03/20/i...

Living with Long Covid, Invisible Illness and Finding Support - The science intersection In this episode, I’m joined by Emma Wills Taube, who has been living with long Covid since 2022 and went on to set up Long Covid Solidarity, a peer support project connecting people affected by the co...

New episode: Emma Wills Taube on living with Long #COVID, finding support, and navigating an invisible illness.
www.buzzsprout.com/2393977/epis...

#LongCovid #InvisibleIllness #HealthPodcast #PatientVoice #HealthEquity #chronicIllness #podcaster #health

Meet Becki: Healthcare strategist, MSc student, and PSC mum. She joins us as Research Project Lead Volunteer, bringing her professional expertise and lived experience of her daughter’s transplant journey to the heart of what we do. (1 of 2)
#LetsBeatPSC #RareDisease #PatientVoice

We were proud to see Martin Sweeney present PRO-ACT at #EAU26 earlier this week.

A patient-led prostate cancer research project bringing forward the lived experience of patients and partners to inform future practice.

#PPI #PatientVoice #ProstateCancer

As a doctor I felt compelled to agree to ECT- it nearly ruined my life By Cathy Wield

madintheuk.com/2026/03/ect-...

#ECT #MentalHealthDebate #PatientSafety #Psychiatry #InformedConsent #MedicalHarm
#PatientVoice #LivedExperience

Attention all living with LAM! Join the Patient Voice Committee: Review grants, share your perspective, and help fund impactful LAM research.
Learn more: www.thelamfoundation.org/take-action/gss-patient-...

#CureLAM #PatientVoice #LAMResearch #PatientAdvocacy #MedicalResearch

Discover Natalie's story: https://bit.ly/4ecE1Ra

She learned firsthand the importance of always having rescue medication ready—and how quickly it can make a difference.

#HAE #HereditaryAngioedema #RescueMedication #ChronicIllness #AngioedemaAwareness #PatientVoice #AngioedemaNews #Bionews

On 12–13 March, IPOPI took part in the ERN RITA General Assembly in Utrecht, contributing to discussions on improving care for people living with rare immunological diseases.

#RareDiseases #PatientVoice

Did you see❓ @hqip.bsky.social patient representative shares how being part of our Service User Network (SUN) has enabled her to use her lived experience, both as a patient and as a carer, to help shape healthcare improvement.

Read the article in full.⬇️

#PatientPerspective #PatientVoice

As a doctor I felt compelled to agree to ECT- it nearly ruined my life By Cathy Wield

madintheuk.com/2026/03/ect-...

#ECT #MentalHealthDebate #PatientSafety #Psychiatry #InformedConsent #MedicalHarm
#PatientVoice #LivedExperience

As a doctor I felt compelled to agree to ECT- it nearly ruined my life By Cathy Wield

madintheuk.com/2026/03/ect-...

#ECT #MentalHealthDebate #PatientSafety #Psychiatry #InformedConsent #MedicalHarm
#PatientVoice #LivedExperience

#HealthcarePolicy #EvidenceInPractice #CareCoordination #PatientVoice #HealthResearch #EquitableCare #RareDiseaseDay #PatientExperience #PersonCentredCare #HealthEquity #RareDiseases

Mental health notes are now open in Canada! 🇨🇦

CAMH, Canada’s largest mental health and addiction teaching hospital, recently released the 'Nothing About Me, Without Me (including My Health Record)' project: lnkd.in/eQ8aFTit

#Medsky #PatientVoice #PatientExperience #DisabilityJustice

As a doctor I felt compelled to agree to ECT- it nearly ruined my life By Cathy Wield

madintheuk.com/2026/03/ect-...

#ECT #MentalHealthDebate #PatientSafety #Psychiatry #InformedConsent #MedicalHarm
#PatientVoice #LivedExperience

As a doctor I felt compelled to agree to ECT- it nearly ruined my life By Cathy Wield

madintheuk.com/2026/03/ect-...

#ECT #MentalHealthDebate #PatientSafety #Psychiatry #InformedConsent #MedicalHarm
#PatientVoice #LivedExperience

Audience seated at round tables watching a panel discussion on stage at the IPHA conference. Avril Daly is one of the speakers, sitting in armchairs under blue lighting with a large screen displaying the session title “Competitiveness for Equity: Shaping Europe’s Health Agenda under Ireland’s EU Presidency” at the IPHA Conference. The IPHA logo is projected on the stage curtain.

onference audience watching a large screen showing a close-up of Avril Daly speaking during the IPHA Conference. A podium beside the stage displays the conference theme “Steering Disruption,” with blue stage lighting and attendees seated in the foreground.

Great discussion at the IPHA Annual Conference in Dublin. Our CEO Avril Daly joined the panel “Competitiveness for Equity: Shaping Europe’s Health Agenda under Ireland’s EU Presidency.” Innovation, research, and access to new therapies were all discussed. #IPHA2026 #PatientVoice

Please see our official statement regarding the Same Day Emergency Care Unit at The Royal London Hospital and the latest update following discussions with commissioners.

#SickleCellSociety #SickleCell #PatientVoice #HealthEquity

As a doctor I felt compelled to agree to ECT- it nearly ruined my life By Cathy Wield

madintheuk.com/2026/03/ect-...

#ECT #MentalHealthDebate #PatientSafety #Psychiatry #InformedConsent #MedicalHarm
#PatientVoice #LivedExperience

Breaking news: We have been in discussions with commissioners regarding the Same Day Emergency Care Unit at The Royal London Hospital, and as a result, it will reopen.
Full statement to follow.
#SickleCell #SickleCellSociety #PatientVoice #HealthEquity #NHS

As a doctor I felt compelled to agree to ECT- it nearly ruined my life By Cathy Wield

madintheuk.com/2026/03/ect-...

#ECT #MentalHealthDebate #PatientSafety #Psychiatry #InformedConsent #MedicalHarm
#PatientVoice #LivedExperience

DAY 2 – The future of medicine took center stage at King Chulalongkorn Memorial Hospital for the IPOPI | SEAPID | Chulalongkorn | Erasmus MC Meeting in Bangkok.

Bolder therapies. Deeper collaboration. Brighter futures for people living with IEI.

#IPOPI #IEI #CART #Immunology #PatientVoice

DAY 1 - Leaders in immunology gathered at King Chulalongkorn Memorial Hospital for the IPOPI | SEAPID | Chulalongkorn | Erasmus MC Meeting in Bangkok.

#IEI #PatientVoice #Immunology

Person Centred Procurement Webinar Our new State of Person Centred Care report brings together, for the first time, insights from the national patient and staff experience programmes we deliver on behalf of the Care Quality Commission ...

Missed the webinar? Watch on demand: bit.ly/SoPCCRecording

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#PersonCentredCare #PatientExperience #PatientVoice #HealthAndCare #NHS #PickerEurope #PENAwards