#PatientPerspectives
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rheumawrite.bsky.social
COVAD Survey #autoimmune #rheumatology #immunology #patientperspectives #rheumsky #medsky

⬇️
www.surveymonkey.com/r/TV6JF75
February 1, 2025 at 8:20 AM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

"A program in which paediatric rheumatic disease patients and their parents create meaning in their experiences."

t.co/cobpRu3Dh4
November 10, 2024 at 1:00 PM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

💬"Allowing me to manage my care and advocate for myself in medical appointments, even as a pediatric patient, prepared me for the transition to adult care."

t.co/IVxIJDkZpz
November 10, 2024 at 3:00 PM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

💬"Implementing “My Knee Notes” helped me manage my knee health more confidently and effectively. The tool strengthened the patient-provider relationship, leading to more personalized care."

t.co/gLhpBWdtig
November 13, 2024 at 3:08 AM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

"For many BIPOC individuals with chronic illness, BIPOC-only spaces are crucial for fostering community, building trust, and addressing complex topics often challenging in non-BIPOC spaces."

t.co/s78ZBN3Oub
November 10, 2024 at 5:00 PM
jamiechiehlo.bsky.social
Wonderful #PatientPerspectives poster by @japan_rheu_vas on a low intensity strength training designed for patients with #RheumaticDisease.

Ten simple 2-3 minute videos to prevent osteoporosis and improve mood/QoL!
October 26, 2025 at 4:14 PM
theevidencebase.bsky.social
Building trust in the #EuropeanHealthDataSpace: legal, clinical, and #PatientPerspectives on #privacy, #AI, and #ethics | Becaris Publishing becarispublishing.com/digital-cont...
Building trust in the European Health Data Space: legal, clinical, and patient perspectives on privacy, AI, and ethics | Becaris Publishing
becarispublishing.com
June 30, 2025 at 12:38 PM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

💬"Since my diagnosis with diffuse scleroderma and ILD, I have balanced the roles of patient and young pharmacist."

acrabstracts.org/abstract/my-...
My Journey with Diffuse Scleroderma and Interstitial Lung Disease: A Pharmacist’s Perspective - ACR Meeting Abstracts
Background/Purpose: Since my diagnosis with diffuse scleroderma and ILD, I have balanced the roles of patient and young pharmacist. A duality that has surely impacted my approach to managing my condit...
acrabstracts.org
November 9, 2024 at 2:36 AM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives
💬"The sauna is a crucial part of my disease management routine, aiding in relieving or lessening debilitating symptoms." - @/chroniceileen
acrabstracts.org/abstract/swe...
Sweat It Out: How the Sauna Has Helped Me Cope with Rheumatoid Arthritis - ACR Meeting Abstracts
Background/Purpose: Since receiving my rheumatoid arthritis (RA) diagnosis in 2015, I have found that one of my top five strategies to manage my symptoms is spending time in the sauna. Over the years,...
acrabstracts.org
November 7, 2024 at 2:16 PM
coopspeak.bsky.social
I’m only saying what’s true. When @theresisters.bsky.social interviewed you, I listened very closely, still have my handwritten notes, & I listened to your experiences and you told us that patient perspective, experiences are valuable & real.
It’s not in my head. #patientperspectives
November 29, 2024 at 12:36 PM
amenduk.bsky.social
Living with a RET gene mutation: patient perspectives
in Endocrine-Related Cancer, Authors: Caroline Brain, Joanna Grey, and Kirstie Purnell

🔗 doi.org/10.1530/ERC-...

#endosky #RET #RETgene #MEN2 #MEN2A #MEN2B #endocrinecancer #MTC #medullarythyroidcancer #patientperspectives #RET@30
Living with a RET gene mutation: patient perspectives
Multiple endocrine neoplasia type 2 (MEN2) is the collective term for two distinct types of autosomal dominantly inherited neuroendocrine neoplasm syndromes: MEN2A and MEN2B (or MEN3). MEN2 is charact...
doi.org
January 9, 2025 at 11:28 AM
cjkhd.bsky.social
#Clinician and #PatientPerspectives on barriers and facilitators to the use of #SGLT2 inhibitors in Australia
@sagepub.com
@csnscn.bsky.social

doi.org/10.1177/2054...
Figure 2. Proposed approaches to improve SGLT2 inhibitor use
July 21, 2026 at 6:38 PM
cjkhd.bsky.social
What are #patientperspectives of #CKD patients in Bangladesh? This study underscores the importance of healthcare policy reforms and greater patient awareness. #StayHealthy #CKDawareness @csnscn.bsky.social

doi.org/10.1177/2054...
April 27, 2026 at 11:30 AM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

💬"I’ve fine-tuned my management of my disease toward being a “precision” patient."

acrabstracts.org/abstract/liv...
Living Well with a Rare Rheumatic Disease – Becoming a “Precision” Patient on the Horizon of Precision Medicine - ACR Meeting Abstracts
Background/Purpose: My journey with a rare, chronic, relapsing rheumatic disease began in November 2010 with a variety of seemingly unrelated symptoms:  migrating joint pain, night sweats, sinus conge...
acrabstracts.org
November 9, 2024 at 2:38 AM
rarediseaseadvisor.bsky.social
In her latest patient perspective column, Kristy Coleman opens up about navigating the emotional highs and lows of living with immune thrombocytopenia (#ITP).

Read Kristy's full column 🖊️: https://bit.ly/41n7a6v

#RareDisease #RareVoices #PatientPerspectives #MedSky
A quote on a blue textured background reads, "I have to remind myself every day that I have no control over what my body does. I’ve been here before, and I’m positive I’ll be here again. It wasn’t worth the tears this time." Below, there is a circular photo of a person with glasses and a smile. The name "Kristy Coleman" and the title "ITP Contributor" are included.
March 24, 2026 at 5:47 PM
acrmjournals.bsky.social
A new Open Access mixed systematic review explores patients’ and physiotherapists’ perspectives on group-based rehabilitation interventions.

Full article: https://www.archives-pmr.org/article/S0003-9993(25)01133-5/fulltext

#ArchivesPMR #OpenAccess #Physiotherapy #PatientPerspectives #ACRM
January 8, 2026 at 5:51 PM
acrmjournals.bsky.social
A new Open Access mixed systematic review explores patients’ and physiotherapists’ perspectives on group-based rehabilitation interventions.

Full article: https://www.archives-pmr.org/article/S0003-9993(25)01133-5/fulltext

#ArchivesPMR #OpenAccess #Physiotherapy #PatientPerspectives #ACRM
January 16, 2026 at 5:51 PM
theevidencebase.bsky.social
Center for Innovation & Value Research blueprint aims to embed #PatientPerspectives across healthcare research and decision-making | Becaris Publishing becarispublishing.com/digital-cont...
Center for Innovation & Value Research blueprint aims to embed patient perspectives across healthcare research and decision-making | Becaris Publishing
becarispublishing.com
July 17, 2025 at 12:25 PM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

"How Completing a Systematic Literature Review Improved How I Research My Own Rheumatoid Arthritis and Comorbidities"
How Completing a Systematic Literature Review Improved How I Research My Own Rheumatoid Arthritis and Comorbidities - ACR Meeting Abstracts
Background/Purpose: Twelve years ago, I was diagnosed with rheumatoid arthritis (RA). Initially, I was hopeful that the first biologic DMARD would slow the disease and relieve my symptoms. After trying eight different biologics and biosimilars, I found a regimen that effectively manages my RA symptoms. When gastrointestinal issues began, I set out to find answers. […]
acrabstracts.org
November 10, 2024 at 4:00 PM
rheumcat.bsky.social
#ACR24 #countdown
#PatientPerspectives

💬"Our chronic illnesses haven’t been resolved by our support group, but our challenges are much more bearable with each other."
Support Groups and Chronic Illness: Finding Social Support Among Peers - ACR Meeting Abstracts
Background/Purpose: Like many lupus patients, my journey has been long, complex, and difficult. I began experiencing symptoms in 2019. Over the next five years, I worked with 17 doctors over nine different specialties as I tried to find a reason—and a solution—for my increasingly debilitating symptoms. Eventually, I was diagnosed with undifferentiated connective tissue disease, […]
acrabstracts.org
November 13, 2024 at 3:08 AM
savaslab.bsky.social
In case you are looking for reading about the critical role of public members in research to advocacy, I invite you to read this paper by our public partnership: 💗 🥰

link.springer.com/article/10.1...

#AtlanticCanada #Cancer #PrecisionOncology #InnovativeIdeas #PatientPerspectives
Cancer, precision medicine, and Atlantic Canada: A priority setting exercise by the Atlantic Cancer Consortium Patient Advisory Committee - Discover Health Systems
Background Precision Medicine in oncology is a rapidly evolving field aiming to prevent and treat cancers based on detailed patient and tumor characteristics. To better develop research studies, healt...
link.springer.com
June 3, 2025 at 7:14 PM
artcsmartc.bsky.social
🍃A place to learn and share info & experiences from other patients and their own perspectives!

#wellness
#mentalhealth
#depression #therapy
#ketaminetherapy
#VitaminD #magnesium
#vitaminDdeficiency
#patientperspectives
#alterativehealing
#healing #naturalhealing

discord.gg/PNVHkujD
Join the 2buds 1shroom Discord Server!
Check out the 2buds 1shroom community on Discord - hang out with 388 other members and enjoy free voice and text chat.
discord.gg
April 1, 2025 at 11:22 PM
retinaint.bsky.social
Retina International is gearing up for @arvoinfo.bsky.social where Avril Daly and Dr. Nabin Paudel will present two important poster sessions on:
- Patient-driven insights into Geographic Atrophy
- Using ChatGPT-4o to support AMD patient education
📅 May 4 & May 6
#PatientPerspectives #AIinHealthcare
A promotional graphic for ARVO 2025 featuring Avril Daly, CEO of Retina International. A black and white portrait of Avril appears in the upper right corner. Text reads: “Avril Daly, CEO, Retina International #ARVO2025 May 4, 2025 from 8:00 AM to 9:45 AM Burden of geographic atrophy and treatment expectations of therapies: perspectives from patient-driven research funding and support organizations.” Retina International’s colorful logo is at the bottom right. The background is a dark blue-gray with pink and lavender design elements. A promotional graphic for ARVO 2025 featuring Dr. Nabin Paudel, Head of Research & Programmes at Retina International. A black and white portrait of Dr. Paudel appears in the upper right corner. Text reads: “Dr. Nabin Paudel, Head of Research & Programmes, Retina International #ARVO2025 May 6, 2025 from 3:30 PM to 5:15 PM Accuracy and Readability of ChatGPT-4o Generated Responses to queries on Age-related Macular Degeneration for Patient Education and Counselling.” Retina International’s colorful logo is at the bottom right. The background is a dark blue-gray with yellow and beige design elements.
April 8, 2025 at 1:51 PM
cjkhd.bsky.social
A qualitative study addresses hearing-impaired #patientperspectives on the use of communication tools during outpatient #hemodiaylsis settings. @csnscn.bsky.social @sagepub.com

doi.org/10.1177/2054...
July 13, 2026 at 1:51 PM
pkdinternational.bsky.social
🧵 3/4 This survey is essential: because as #AI and #OpenScience transform research, #patientperspectives must lead the way 🗣️
It will:
• Understand how people with PKD perceive these changes
• Identify what matters most to patients
• Ensure safe, ethical, patient-centred research
April 7, 2026 at 9:03 AM