#PatientVoices is an active hashtag on Bluesky. In the last 30 days, 5 people shared 13 posts with it — around 0 a day. Activity is down 100% versus the previous week, peaking on Jul 28 with 2 posts.

Posts with #PatientVoices

Long Covid Kids

@longcovidkids.bsky.social

over 1 year ago

“Many of you know that my son is still battling complications from Long Covid. We are well into the 5th year of his decline which began when he was 10 years old” Royal Hansen. We agree, “there is more to be done” www.linkedin.com/pulse/gr…. #LongCovidKids #LongCovid #PatientVoices

www.linkedin.com

Growing Up Sick

“A healthy [child] wants a thousand things, a sick [child] only wants one.” - Confucius Many of you know that my son is still battling complications from Long COVID.

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Long Covid Kids

@longcovidkids.bsky.social

11 months ago

"My name is Rachel and it was early in the first lockdown when I got ill. I was 12 years old and the message at the time was that Covid didn’t affect children, so I believed it" www.longcovidkids.org/pos…. #YoungVoices #PatientVoices #LongCovidKids #LongCovid #PaediatricLongCovid

www.longcovidkids.org

"My childhood ended overnight" Rachel's Story| Long Covid Kids Real Life Stories

"My name is Rachel and it was early in the first lockdown when I got ill. I was 12 years old and the message at the time was that Covid didn’t affect children, so I believed it"Rachel now 18 is still ...

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Helen Ward

@profhelenward.bsky.social

over 1 year ago

Wow! Profs Clare Bambra, Christina Pagel, Roz Shafran, Melanie Calvert & me. All elected Fellows of the Academy of Medical Sciences this year! Good news for #longcovid, #equity, #patientvoices #womeninscience? @profbambra.bsky.social, @chrischirp.bsky.social acmedsci.ac.uk/more/news/ac...

acmedsci.ac.uk

Academy of Medical Sciences announces new Fellows for 2025

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Long Covid Kids

@longcovidkids.bsky.social

over 1 year ago

Be a Voice for Change – Help spread awareness about #LongCovid by sharing your story. Your experiences can help others feel less alone & inspire change. Join our list to get involved in #Articles #Radio #TV bit.ly/3EptWm6 #LongCovidKids #PatientVoices #Disability

Yellow image showing a white microphone, and a reel of film across the top of the page. Orange test says 'Share your lived experience' .

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✨ Soft Grit Spoonie ✨

@softgritspoonie.bsky.social

about 1 year ago

Medical gaslighting can make you doubt your own body. Just a reminder: you know yourself best, and your experience is real. #DisabilityAwareness #ChronicIllnessCommunity #SpoonieSupport #MedicalTrauma #PatientVoices #SoftGritSpoonie

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RCP museum

@rcpmuseum.bsky.social

26 days ago

📣New exhibition alert!! 👀 We are excited to announce new exhibition 'Patient voices: power, truth, understanding' will be opening on 14 September 2026 at the RCP - exploring the lived experience of healthcare. 👉 history.rcp.ac.uk/exhibit…. @rcphysicians.bsky.social #PatientVoices

A exhibition graphic with the title and dates of exhibition. Included is a black and white photo of a smiling woman sitting in a hospital bed.

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Unremarkable Me

@unremarkableme.bsky.social

about 1 year ago

2026 is coming… and so is change. New EDS & HSD diagnostic criteria are finally landing. Built on our stories. Our data. This is the beginning of being seen. #EDS #HSD #ChronicIllness #EDS&Chiari #UnremarkableMe #EDS2026 #PatientVoices #DisabilityRights www.unremarkableme.com/po….

www.unremarkableme.com

The 2026 EDS Criteria

🖤 By Antonia @ Unremarkable Me | Published June 2025 If you live with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), you already know the drill. You know the soul-crushing drea...

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CreakyJoints®

@creakyjoints.bsky.social

12 months ago

What if the pain scale isn't telling the whole story? When you live with multiple types of chronic pain, “rate it from 1 to 10” just doesn’t cut it. This article breaks down why—and what we can do better. 🔗 creakyjoints.org/living-w…. #ChronicPain #PainAwarenessMonth #PatientVoices

creakyjoints.org

Why Pain Scales Don’t Work When You Have Multiple Types of Chronic Pain: An Arthritis Patient’s Perspective

Learn more about a patient’s perspective on the problem with pain scales when you have multiple types of arthritis and chronic pain.

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Long Covid Kids

@longcovidkids.bsky.social

about 1 year ago

Thanks to all the children & young people who shared their experiences with @covid19inquiry.scot & to @helen-goss.bsky.social LCK Scotland for ensuring the voices of children with Long Covid in #Scotland are heard. #Scotland #CovidInquiry #PatientVoices @longcovidsupport.bsky.social

Scottish COVID-19 Inquiry @covid19inquiry.scot

Children and young people in Scotland have shared what they think will help shape the nation’s future pandemic preparedness through a case study published today by Let’s Be Heard, the Inquiry’s public participation project. www.covid19inquiry.scot/news/inquiry...

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Unremarkable Me

@unremarkableme.bsky.social

7 months ago

Still waiting on the new hEDS and HSD criteria? You’re not imagining the delay.Here’s what’s happening, why it matters, and what to hold onto meanwhile. #EDS #hEDS #HSD #ChronicIllness #InvisibleIllness #PatientVoices #UnremarkableMe www.unremarkableme.com/po….

www.unremarkableme.com

Waiting for the 2026 Ehlers–Danlos Society Criteria”

By Antonia @Unremarkable MePublished January 2026How people with hypermobility and connective-tissue mysteries sit through science’s intermission, and why the next act mattersWhen you’ve spent years t...

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Long Covid Kids

@longcovidkids.bsky.social

12 months ago

📣 Incoming The very talented Rosie Pidgeon has a new exhibition packed with new pieces. This exhibition will be on display until Friday 24th October. 🔗 👇🏼 millenniumcourt.co.uk/lon…. #Art #Artist #Gallery #PatientVoices

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Mill_lab

@cilialab.bsky.social

over 2 years ago

Welcome to Bluesky to the amazing Tess Harris agamemnon.bsky.social rallyier of #PatientVoices, champion of #RareDisease, and force of nature behind PKD UK and more... so glad you are here! #ciliopathy #PKD #cilia

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