#PatientVoice
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ipopi.bsky.social
📣 If you are living with GATA2 deficiency, or are a family member or caregiver, we encourage you to complete the survey.

Click here to take the survey: www.surveymonkey.com/r/V7B9F83

#GATA2Deficiency #IPOPI #RareDiseases #PatientVoice #StrongerTogether
November 2, 2026 at 11:27 AM
pickereurope.bsky.social
Keeping Healthwatch England is a positive step. The challenge now is ensuring any strengthened model has the powers, resources and independence needed to influence change and improve care.

bit.ly/Pickerrespon...

#CollaborationInCare #Healthwatch #PatientVoice #PatientExperience #HealthPolicy
October 28, 2026 at 1:07 PM
ificinfo.bsky.social
Join us on Wednesday, 18 November for a conversation on patient and lived experience perspectives ahead of #ICIC27.

🕓 4:00 - 5:00pm Dublin | 6:00 - 7:00pm Tallinn

🔗 https://ow.ly/6OVm510220Q

#LivedExperience #PatientVoice
October 29, 2026 at 12:14 PM
almiacm.bsky.social
🏛️En el entorno de #ESMO2026 participamos en la reunión del Patient Advocacy Advisory Board, promovida por Guardant Health, en el que se debatió sobre el estado de la atención oncológica en la Unión Europea

#CáncerMetastásico #PatientVoice #MásTiempoParaVivir
October 29, 2026 at 1:33 PM
healthwatchmcr.bsky.social
Healthwatch Manchester are very pleased to hear the news that local Healthwatch organisations will be retained and strengthened.
We welcome this decision, we can now focus on our future & continue to champion the independent patient voice in Manchester.
#healthwatchmanchester #patientvoice
October 28, 2026 at 12:29 PM
lumanity.bsky.social
Read our whitepaper to discover the benefits of in-trial interviews and why regulators and HTA bodies are increasingly valuing patient experience data in decision making.

lumanity.com/perspectives...

#LumanityPerspectives #PCO #PatientVoice #HTA
Text: Whitepaper. In-Trial Interviews. Assessing the landscape of benefits and opportunities. Lumanity logo.
October 28, 2026 at 8:02 PM
hwstockton.bsky.social
Read our response from Chair, Peter Smith, and a statement from @healthwatchengland.bsky.social here https://bit.ly/47N1YMv

#stocktonontees #health #patientvoice
Healthwatch England and local Healthwatch organisations to be retained and strengthened | Healthwatch Stocktonontees
The Government has today announced that Healthwatch England and local Healthwatch organisations - which includes Healthwatch Stockton-on-Tees - will be retained and the strengthened. Read our response.
bit.ly
October 28, 2026 at 1:29 PM
catarinasmarques.bsky.social
lnkd.in/p/etubKDYz
#agorafederation #chronicpain #thehiddencostofpain #painawareness #rmds #patientvoice | AGORA FEDERATION OF ASSOCIATIONS FOR PATIENTS WITH RMDs
Chronic pain carries a cost that often goes unseen. Interrupted sleep. Cancelled plans. Strained relationships. Difficulties staying in work. These experiences can affect a person’s wellbeing, indepen...
lnkd.in
October 25, 2026 at 11:43 AM
ikccorg.bsky.social
Have you completed the Global Patient Survey on Kidney Cancer yet? Your voice matters! Take a few minutes to share your experience and help shape the future of kidney cancer care. Every response counts!

Take the survey today: buff.ly/fvjKWHI

#KidneyCancer #PatientVoice
October 23, 2026 at 1:01 PM
psor.org
Psoriatic Disease: 360. Your experience of psoriatic disease in 360 characters or fewer, anonymous if you prefer. Help us show the full picture. https://f.mtr.cool/axxbfp576p #PsoriaticDisease #Psoriasis #PatientVoice
Psoriatic Disease: 360 | Psoriatic Disease UK
An awareness project to show the true, 360-degree reality of living with psoriasis and psoriatic arthritis.
f.mtr.cool
October 23, 2026 at 10:31 AM
ifaiarthritis.bsky.social
Your lived experience matters. Not just your symptoms or test results, but how your condition affects everyday life. At AiArthritis, we listen to patients and put those experiences to work. 💬 What do you wish more people understood? #AiArthritis #PatientVoice
October 21, 2026 at 5:00 PM
europeanlung.bsky.social
🫁 From AI and air pollution to asthma, COPD and patient partnerships, #ERSCongress2026 showcased some of the latest developments in lung health research.

🎥 Watch three selected Congress sessions free online and explore the highlights: https://bit.ly/4i6oSmJ

#LungHealth #PatientVoice
October 21, 2026 at 2:49 PM
buttahflyk.bsky.social
I’ve been building up to this one for a while … had to calm myself enough to write something well-reasoned and not expletive-laden! (It definitely deserves them, but I couldn’t publish on #Sarcoidosis News that way).
🦋
#ChronicIllness #disability #PatientAdvocate #PatientExperience #PatientVoice
FLaB background with Bitmoji of me pointing to my column header. Text reads: New this week on Sarcoidosis News (a bionews community) We need to keep sharing our stories and reject the 'sickfluencer' narrative Read the column on Sarcoidosis News at sarcoidosisnews.com/float-like-a-buttahfly-kerry-wong
October 23, 2026 at 2:04 PM
pkdinternational.bsky.social
🧵 (4/4) Please take a moment to read her story:
🔗 www.era-online.org/publications...
⠀
#PKDInternational #ADPKD European Kidney Patients’ Federation European Renal Association #PatientVoice #KidneyDisease #PatientAdvocacy
www.era-online.org
October 21, 2026 at 8:37 AM
pce-europe.bsky.social
Help researchers understand what matters to you! UK patients with advanced or metastatic PDAC may participate in an interview to discuss treatment experiences and outcomes.

Check your eligibility: https://survey.cmix.com/F3BA8E5D/7E303C4Q/en-GB

#PancreaticCancer #PatientVoice #PDAC #CancerResearch
October 21, 2026 at 11:02 AM
hqip.bsky.social
Sharon-Ann shares her thoughts about the value of data and #PatientInvolvement in the design and delivery of breast cancer care.

🎥 Watch the full video interview or read the article here: www.hqip.org.uk/news/my-brea...

#BreastCancerAudit #PatientVoice #ClinicalAudit
October 21, 2026 at 11:25 AM
ikccorg.bsky.social
⏱️ It takes just 15 minutes to make your voice heard and help shape a better future for the kidney cancer community.

Every experience counts. Every voice matters. Together, we can make a difference!

👉 Take the survey today: buff.ly/fvjKWHI

#KidneyCancer #PatientVoice #KidneyCancerAwareness
October 21, 2026 at 3:00 PM
healthwatchbh.bsky.social
According to figures published by NHS England, people in South East Coast Ambulance Service NHS Foundation Trust's region are more likely to survive an out-of-hospital cardiac arrest than the national average for England.

Learn more here: buff.ly/OqLN3WC

#Healthwatch #SECAmb #PatientVoice
SECAmb continues to drive up cardiac arrest survival | Healthwatch Brightonandhove
South East Coast Ambulance Service NHS Foundation Trust (SECAmb) is leading the way nationally in achieving a 30-day cardiac arrest survival rate of 17.2 per cent.
buff.ly
October 22, 2026 at 11:35 AM
louwjay.bsky.social
Were you or a loved one in hospital with flu, COVID-19 or RSV? 🏥

Your experience can shape what future treatment studies measure.

📝 20-min survey, no medical knowledge needed: www.calibrum.net/srvcas3/w.as...

#COSAVRI #PatientVoice #CoreOutcomeSet
Calibrum.com
www.calibrum.net
October 20, 2026 at 1:05 PM
hqip.bsky.social
Our recent article highlights how clinical audit is helping the NHS improve the entire breast cancer pathway. It features Carla Whitbread, NAoME Patient Representative with MBC lived experience.

Read in full: www.hqip.org.uk/news/clinica...

#BreastCancer #PatientVoice @natcan-news.bsky.social
October 20, 2026 at 1:21 PM
europeanlung.bsky.social
🫁 Today is #ChronicCoughDay.

Chronic cough can affect sleep, work, relationships and quality of life.

👉 Learn more about chronic cough and how to get involved through our Patient Advisory Group: https://bit.ly/4jm3kou

#WCCD2026 #ChronicCough #PatientVoice @EuroRespSoc
October 15, 2026 at 8:58 AM
europeanlung.bsky.social
📣 Happening tomorrow!

Join the ELF Annual Stakeholder Meeting and help shape our priorities for 2027 and beyond.

Meet our new Chair and Vice Chair, hear highlights from the past year and share your views on the future of ELF.

👉 https://bit.ly/4AXo2l7

#PatientVoice #LungHealth
October 14, 2026 at 3:06 PM
healthwatchbh.bsky.social
Are you looking for advice or information about health & social care? We can share information, advice, or signpost you to local services.

Get in touch:
01273 234 040
advice@hwbh.co.uk
healthwatchbrightonandhove.co.uk/contact-us

#Healthwatch #PatientVoice #IndependentVoice #healthwatchmatters
A young person looking at a phone in front of a wall of graffiti. Image includes a Healthwatch Brighton and Hove logo and text that says: Are you looking for advice or information about health & social care? Healthwatch is here to help. We are independent from the NHS and local councils who provide these services, and can provide information, advice, or signpost you to services in Brighton and Hove. You can also anonymously record your experiences - good or bad - with us. Contact us today: 01273 234 040 advice@hwbh.co.uk healthwatchbrightonandhove.co.uk/contact-us
October 15, 2026 at 1:50 PM
fertilityeurope.bsky.social
Fertility Europe was pleased to bring the patient perspective to the PTMRiE Scientific Symposium 2026 in Świnoujście.
Our Secretary, Bojana Santic, was invited to speak on “Infertility care: What still needs to be done? Patients’ perspective.”
#PatientVoice
October 13, 2026 at 1:48 PM
europeanlung.bsky.social
⏰ Just 3 days left to register: https://bit.ly/4AXo2l7

What should ELF focus on in 2027 and beyond?

Join our online annual stakeholder meeting and help shape future priorities for patients, carers and the wider lung health community.

#PatientVoice #LungHealth
October 12, 2026 at 4:14 PM