#PatientAdvocacy is an active hashtag on Bluesky. In the last 30 days, 35 people shared 65 posts with it — around 2 a day. Activity is down 20% versus the previous week, peaking on Jul 14 with 7 posts.

Posts with #PatientAdvocacy

Sean Mullen, Ph.D.

@drseanmullen.bsky.social

about 1 year ago

Tired of being gaslit about your Covid precautions in healthcare facilities or #LongCovid? This 1-page letter has key studies on brain, heart & immune damage—perfect for printing & handing to your doctor. Download: uofi.app.box.com/s/9llu70…. #PatientAdvocacy #ChronicIllness #MedicalGaslighting

uofi.box.com

52 158 409

Brian Wallach

@bsw5020.bsky.social

about 1 year ago

Moms filed Citizens Petition asking the #USFDA to approve #NurOwn after it helped their loved ones with ALS "live longer & live better" www.biospace.com/policy/p…. #EndALS #patientadvocacy #GoodTrouble #mamabears #BrainstormCell

www.biospace.com

Patients Fight for Access to BrainStorm’s ALS Drug After Expanded Access Data ‘Defy Logic’

Participants in trials of BrainStorm Cell Therapeutics' NurOwn filed a Citizens’ Petition with the FDA earlier this month seeking a new review of the stem cell therapy that was rejected in 2022 based ...

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JustAnne

@smartpatient.bsky.social

3 days ago

If your doctor ever tells you it's all in your head, find a new doctor. Your symptoms matter. Your experience matters. Keep advocating for yourself. #ChronicIllness #PatientAdvocacy #Spoonie

2 2 7

Sammie McFarland

@sammiemc.bsky.social

12 months ago

"We urge practitioners to treat patient-generated data as a valuable resource. Without this shift, patients with contested illnesses like long Covid risk remaining stuck in a system where they have to be their own doctors." Dr Jayadeva www.bbc.co.uk/news/article...? #LongCovid #PatientAdvocacy

www.bbc.co.uk

Long Covid patients gaslit by GPs, Surrey study finds - BBC News

The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.

1 15 26

Still Rolling

@stillrollingoutdoors.com

about 20 hours ago

The hidden #costs of chronic illness go beyond symptoms. Sarah Sisbot reflects on #drains, #invalidation, treatments and #rituals that help us keep moving forward. A #thoughtful read on the #unseenwork of living with illness. buff.ly/n7hRaRO #ChronicIllness #PatientAdvocacy #Rheumatology

buff.ly

August Writing Prompts for People with Chronic Illness

Some things that get me down: social media, the ACR's current policies, 2x daily injections

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Riko Siempre, RN 🫶🩺 【IRIAM US】

@rikosiempre.vtubers.social

almost 2 years ago

This is my promise to all of you within the #Vtuber, #ENVtuber, and #vsky community. I also make this promise to anybody outside of them, and if you belong to other communities. #nursing #publichealth #patientadvocacy #healthcare #patientrights youtu.be/O7ohYRNjAgA

youtu.be

A Promise

YouTube video by Riko Siempre, RN Ch.

1 4 16

Adrian Liston

@labliston.bsky.social

about 1 month ago

Ever wonder how your career (and life!) could have turned out differently if you had picked that PhD project in London instead, or gone into #patientadvocacy rather than a #postdoc? What different lives could you have lived? Now you can find out! www.amazon.co.uk/Professo….

2 5 16

Audrey Vernick

@audreyvernick.bsky.social

over 1 year ago

It's Epilepsy Awareness Month, and there is no better time to remind you that this journey can severely impact siblings of children with epilepsy. Watch here: ow.ly/PHp850U2yo6 #epilepsy #epilepsyawareness #NEAM2024 #EpilepsyAwarenessMonth #PESAlliance #NeuroSky #PatientAdvocacy

Child sitting with head in arms with text overlay: "Siblings of children with epilepsy can experience trauma. Pediatric Epilepsy Surgery Alliance. epilepsysurgeryalliance.org"

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JustAnne

@smartpatient.bsky.social

7 days ago

Tip from someone who learned the hard way: bring data to your doctor appointments. Even rough notes about when symptoms happen and what makes them better or worse can change the conversation completely. #PatientAdvocacy #ChronicIllness #HealthTracking

2 1 5

The Life Raft Group - GIST Support

@liferaftgroup.bsky.social

1 day ago

Join #TriageCancer for "Ready to Return: Understand Your Rights When Going Back to Work" on August 26 at 1 PM ET. Learn about your workplace rights, accommodations, and returning to work after cancer. Register: bit.ly/Triage-BackT... #CancerSupport #ReturningToWork #PatientAdvocacy #KnowYourRights

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Patty Reboli Spears

@paspears88.bsky.social

over 1 year ago

Landed in Chicago! On my way to @theaacr.bsky.social #AACR25 meeting as part of the #AACRSSP25 program! Looking forward to networking and learning about cancer research… @unclineberger.bsky.social #patientadvocacy @arosen380.bsky.social @jillfeldman4.bsky.social @bobriter.bsky.social

1 1 14

Sammie McFarland

@sammiemc.bsky.social

6 months ago

"Don't EVER Stop" "Don't keep this hidden" "There are people who care about you" This #podcast is really worth a listen. #LongCovidKids #LongCovid #PatientAdvocacy #Family #ChildrensRights #Parenting #LivedExperience @longcovidkids.bsky.social @longcovidfam.bsky.social

"Believe your kids, you are their biggest advocate and don't ever stop"
DR ELHAM RAKER'S MESSAGE TO PARENTS OF YOUNG PEOPLE WITH LONG COVID.

DARYA'S MESSAGE TO YOUNG PEOPLE WITH LONG COVID "DON'T KEEP THIS HIDDEN, DON'T KEEP YOUR EMOTIONS BOTTLED IN, THERE ARE PEOPLE WHO CARE ABOUT YOU"

Long Covid Kids @longcovidkids.bsky.social

#Podcast Thank you to Darya, and her Mum Elham Safani Raker, for sharing their experience. Together, they speak openly about school, friendships, identity, and the toll that this type of chronic illness takes during adolescence podcasts.apple.com/gb/podcast/e... #longcovid #childhood #GrowingUp

podcasts.apple.com

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