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
What started as a routine eye appointment turned into something else… fast.
No time to process — just go.
🎥 Follow along on NielFlamm.com → Videos → Cataracts
#HealthJourney #Cataracts #PatientPerspective
#HAE #ShareYourStory #PatientVoices #CaregiverVoices #RareDisease #ChronicIllness #InvisibleIllness #PatientAdvocacy #CaregiverSupport #HealthAdvocacy #RareDiseaseCommunity #MedicalStories #PatientPerspective #HealthJourneys #RareDiseaseAwareness #BioNews #AngioedemaNews
A decade with ovarian cancer reveals resilience, advocacy and the importance of evidence-based care from patients living the journey every day. #CancerSurvivorVoices #PatientPerspective #TCSC www.curetoday.com/view/10-thin...
In this month’s issue of #SGIMForum, authors Nelson, Hyde, Mookherjee, and McDonough present a rare case of rapid progression from autoimmune hypothyroidism to hyperthyroidism, highlighting the patient’s perspective.
Read more: buff.ly/yo3uAvf
#InternalMedicine #PrimaryCare #PatientPerspective
🧠 Patience takes practice
Bruce Campbell, Pompe contributor, shares how living with #PompeDisease has taught him to actively listen to his body and to respect its limits.
Read Bruce's story ➡️: https://bit.ly/4j22n2m
#RareDisease #PatientPerspective #RareVoices #PompeStrong
💙 The compassion of medical students matters.
#CIDP Contributor Jaimie Sheil shares how medical students' compassion shaped her rare disease journey — proving empathy is as vital as expertise.
Read Jaimie’s full article: https://bit.ly/3XSPy0G
#RareDisease #RareVoices #PatientPerspective #MedSky
😮💨 How an #AATD nightmare became a valuable lesson…
AATD contributor Alyssa Gloor shares a recent scare: managing a cold and her rare lung disease—while realizing her inhaler hadn’t been refilled.
Read Alyssa's story here: https://bit.ly/3MybtaW
#RareDisease #RareVoices #PatientPerspective
"I see what you've done for cancer and cancer patients, the results you've achieved, your superhuman efforts, your time-consuming work, and your dedication. I want to say that my respect for you.... grows exponentially every time"
#Oncology #PatientPerspective 2/2
A comment I received that I think goes to all researchers:
"when I go for my oncology checkups, my respect for scientists grows even more as I see the advanced diagnostic tools and the new treatments I learn about when I talk to new patients
#Oncology #PatientPerspective
1/2
Kudos to @whitneywarriors for doing an amazing job presenting at the #ACR25 #PatientPerspective session. By sharing her own challenges and solutions is key to advancing better care. #LADAorg #PatientVoice
@lupuschat.bsky.social @michiganlupus.bsky.social @masonicresearch.bsky.social
📅 📢 Webinaire ESE - 04/10 à 10h
"Living with Adrenocortical Carcinoma (ACC): Care, Support, and What’s Ahead" en présence de médecins et de patients. Traduction en français disponible !
📅 04/10/25 - 10h à 13h
📍 Lieu : à distance
📝 inscription: lnkd.in/dpk2WN7J
#patientperspective #endocrinology
Jaimie Sheil, #CIDP Contributor, discusses the difficult symptoms associated with the diagnosis and how she never expected 'itching' to be one of the most painful.
Read the full column ➡️: https://bit.ly/4pPxrpc
#RareDisease #CIDP #PatientPerspective #MedSky
Spent the day in hospital for a minor procedure. Good days ahead! #HospitalDay #MinorProcedure #HealingJourney #ChronicButComic #OneStepCloser #HospitalLife #PatientPerspective
Kristy Coleman, ITP Contributor, discusses the challenges posed by insurance companies denying coverage and the importance of advocating for yourself.
Read more here: https://bit.ly/3VwdTs4
#RareDisease #ITP #PatientPerspective #MedSky #RareSky
"Part 2: The waiting was over — but the real test had just begun. What happened next in the ER still lingers with me."
#ERStories #HospitalLife #WaitingRoomChronicles #PatientPerspective #Healthcare #HospitalExperience #ERWaitingGame #PublicHealthcare
roselynastclaire.blogspot.com/2025/08/part...
The #LADAOrg Team is excited to be here at #BIO2025 to bring the #PatientPerspective and partner with other stakeholders to advance global #Innovation that improves lives. Kudos to BIO for developing a great program and our dear friend Paul for being a good sport! 💜
The #LADAOrg Team is excited to be here at #BIO2025 in Boston to bring the #PatientPerspective and partner with other stakeholders to advance global innovation that improves lives. Kudos to BIO
for developing a great program and our dear friend Paul for always being a good sport! 💜
New research shows lipedema isn’t just about pain; it’s about shame, stigma & the fight to be seen.
Listen to the latest episode of Legs Like Mine: The Podcast:
👉youtu.be/vBOFSeg-KU4
#LipedemaAwareness #LipedemaResearch #ChronicIllness #LipedemaPodcast #PatientPerspective
He woke up to a button and a life sentence.
Dr. Andrew Kooger recalls the haze of painkillers, the endless button pressing, and the chilling words he heard through the fog: “You’ll likely never walk again.”
#painmanagement #drsinicropi #andrewsstory #nevergiveup #healingjourney #patientperspective
When science is personal🎗
I'm a researcher—and a terminal patient. Cutting research funding isn't just political, it's life or death.
open.spotify.com/episode/7wrp...
#ScienceMatters #ResearchSavesLives #CancerResearch #PatientPerspective #FundScience #ClinicalTrials #BreastCancerAwareness
It is so sad that people willingly and ignorantly or intentionally voted for this. #cancer #oncology #cancertreatment #cancerresearch #survivorship #ovariancancerawareness #MedTok #misinformation #PatientPerspective #science #medicalmisinformation #cancertok #cancertreatmenttrials #acedemia
Less than one month away! Hope to see you there!
#AuDA2025 #HearingLoss #LivingWithHearingLoss #PatientPerspective
#CKD patients' perspectives on #telemedicine in outpatient nephrology clinics during COVID-19 - convenient, yet face-to-face appointments preferred for establishing personal in health care.
DOI
doi.org/10.1177/2054...
#Patientperspective
@csnscn.bsky.social @cjkhd.bsky.social
Debt or Dying: The High Costs of Cancer Care in America, One Patient's Perspective ascopubs.org/doi/10.1200/...
#JCOOP #PatientPerspective #JCOJournals #financialtoxicity #oncsky #freetoread
A quick post to say thanks to everyone who’s been listening in to my #podcasts on PsA HQ channel, it really helps to inspire me & makes it worthwhile. 🎤More planned so please stay tuned and follow 🖐🏻🎧All links in my bio #rheumatology #patientperspective #patientresearchpartners
Feel free to share as much or as little as you’re comfortable with, and you can DM me if you’d rather not post publicly. I truly appreciate your time and help! 💙
#PatientPerspective #HealthcareStories #SchoolProject
Richard Scheffer speaks to @paige_ai about his work as a patient advocate with @ProstateUK and his participation in the ARTICULATE PRO project at @NDSurgicalSci. Read more about his amazing journey:#prostatecancer #cancercare #patientperspective
paige.ai/blog/paige-tur…
A slide from Maureen Smith’s great presentation re: roles for patient partners in research.
#GenomicsSociety2019 @Maureenchats #PatientPerspective
