Doing it like a second job?
Resting, eating right, moving...
Still feel like warmed‑over dooky?
Drug‑Induced Nutrient Depletion is real.
It's not defiance to #AskQuestions.
Not inevitable. Testable. Often fixable.
buff.ly/iy5QGjV
#ChronicIllness #PatientVoice #SelfAdvocacy #HealthSky
Ever heard of #syntheticdata? It helps protect #privacy, improve #healthcareinnovation, and still relies on real patient data.
At #SYNTHIA, we’ve launched a Europe-wide survey to understand your views .
Read more here: bit.ly/4c7if0o
#PatientVoice #IHITransformingHealth #HorizonEU
🤝On 30 March 2026, CPE hosted the Inspire online workshop “Strengthening Patient Participation in Palliative Rehabilitation Research” exploring patients' priorities and expectations on rehabilitative palliative care.
🔗Learn more: lnkd.in/eqtpHJzS
#palliativecare #rehabilitation #patientvoice
We want to hear from you.
If you’ve experienced:
• Frequent painful attacks
• Tophi (lumps under the skin)
• Joint damage
Your story can help improve care for others.
⏱️ Takes 2 minutes:
www.surveymonkey.com/r/goutjourney
#Gout #ChronicIllness #PatientVoice #Healthcare
#TowerHamletsTogether #KeepingTowerHamletsSafe
#HealthAndCare #BetterHealthcare #PatientVoice #CareThatListens #HealthEquity
📣 Completed cancer treatment in Ireland?
Share your experience of nutrition & dietetic support in this national survey led by INDI & UCC.
Help shape the next National Cancer Strategy.
🕓 ~15 mins
🔗 tinyurl.com/nutritionaft...
#CancerSurvivorship #PatientVoice
🧵 1/4 Living with #ADPKD? Take the survey and use your voice to shape the future of ADPKD research. 📣
survey.uni-koeln.de/index.php/31...
🪡 Read this thread 👇
#PKD #PatientVoice #OpenScience #RareDisease #KidneyHealth #HorizonEurope #European #Research
Her message is simple and strong: if something feels off, get checked and don’t give up on getting seen. #PatientVoice #CancerAwareness #TCSC
#HAE #HereditaryAngioedema #HAEawareness #RareDisease #RareDiseaseAwareness #ChronicIllness #ChronicIllnessAwareness #InvisibleIllness #PatientVoice #HealthAdvocacy #BioNews #AngioedemaNews
📣 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
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
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...
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
