Good news! This immunotherapy cancer #patient survey now has #IRB approval. Please share w/#patients so we can learn from them. #cansky #medsky #health

Hey paging all of #CanSky #OncSky #Cancer patients and survivors. We have a community group now we want to build on! It’s easy to join just click the link below 👇👇 bsky.app/chat/itzxP7o

Thank you again to all that helped make #WorldKidneyCancerDay a success! As a reminder, the Emotional Wellbeing Global Symposium is available on YouTube with auto-translated subtitles: www.youtube.com/watch?v=LfO_... We're looking forward to the next #WKCD on 17 June 2027.

Sid's trying to build a little cancer patient/carer community here on BlueSky - why not join? #cansky #cancer

We are grateful to the sponsors and partners who share our commitment to raising awareness for kidney cancer and the emotional burden of living with the disease. Check out the video below featuring Reno and Rina – a kidney love story for #WorldKidneyCancerDay. (1/2)

@care1project.bsky.social A great pragmatic trial that will improve the capturing of real world patient experience using ePROs, and advanced and more relevant #QoL measurements. #kidneycancer #wkcd

The recording of the #WorldKidneyCancerDay Emotional Wellbeing Global Symposium is now available on YouTube! Watch it with auto-translated subtitles: www.youtube.com/watch?v=LfO_... #WKCD

Two images for #WorldKidneCancerDay #WKCD Before checkpoint inhibitor. During checkpoint inhibitor treatment The Emotional Burden is real. The Quality of Life difference is enormous. Just trying to survive the Side Effects day by day. Mood is fragile at best. Honest. @ikccorg.bsky.social

Want to learn more about the importance of emotional wellbeing in cancer care? Hear from a panel of experts, including psycho-oncologist Dr Cristiane Bergerot (BR), at the Emotional Wellbeing Global Symposium on World Kidney Cancer Day (18 June). (1/2)

Join the #WorldKidneyCancerDay Emotional Wellbeing Global Symposium! Patients, caregivers, and healthcare professionals from around the world will come together to discuss the emotional challenges of living with #KidneyCancer. Register: https://www.worldkidneycancerday.org/#WorldKidneyCancerDay#KidneyCancer#AcceleratingCures

Join the global kidney cancer community at this #WorldKidneyCancerDay event on 18 June at 2 p.m. CEST. Register now at www.worldkidneycancerday.org #WKCD (3/3)

Have you registered for the Global Patient and Carer Symposium yet? The online expert panel will address emotional wellbeing while living with kidney cancer. (1/3)

#WorldKidneyCancerDay is now less than 9 days away! Looking for material to share? We have a range of campaign assets in 13 languages, many of which can be customised with your local organisation’s logo. Find them all at www.worldkidneycancerday.org/resources/ #WKCD

Really important #clinicaltrial opportunity for #kidneycancer patients in UK. More sites to open! Patient partners include @ikccorg.bsky.social and ARTur (FR). Will support informed decision making and further RCC research to guide patients for years to come. @care1project.bsky.social

Bravo to Dr Elizabeth Nally and colleagues @qmbci.bsky.social for this much-needed research that explores adjuvant immunotherapy toxicity from patient lens, current Qol measures, and decision regret www.urotoday.com/conference-h... #ASCO26 #kidneycancer

Looking forward to expert discussion on RAMPART. Interesting that monotherapy arm was negative. Side effects significant in double immunotherapy, but no meaningful difference in Qol? Note: 3 grade 5 events (deaths)in Adjuvant setting. #kidneycancer #kcsm #ASCO26

100%. Beyond "listening" to patient perspectives (often too late to effect change). Calls for the patient voice to be fully integrated into systems, governance structures. #patientengagement #ppi

Today, May 20, 2026 is #internationalclinicaltrialsday. Joining patient advocate colleagues from @ikccorg.bsky.social virtually to represent the Patient Advisory Board of the CARE1 #clinicaltrial for 1st line mrcc. Recruiting in many centres across Europe. #kidneycancer @care1project.bsky.social

Great to see the @ikccorg.bsky.social Global Patient Survey data dissected to explore patient experience gaps in Canada, Mexico, and the US. This poster reveals concern over kidney function and yet lack of evidence-based information of how to best manage. #kidneycancer #patientexperience #AUA26

The #WorldKidneyCancerDay website is now live! www.worldkidneycancerday.org (1/2)

Abstract looks good for #kidneycancer patients. @theaacr.bsky.social @elizsmckenna.bsky.social Any way for patient advocates to access please?

Done! #cansky #oncsky #immunotherapy #cancer

If you are a #cancer #patient, please consider taking this 5-minute survey to help us help people live better lives. Follow this link go.osu.edu/pits or scan QR below - thanks!

There’s a global shift happening in research, and Canada is ready. Through the Canada Leads progrgam, UHN has recruited 70+ scientists from around the world, strengthening Canada’s position as a destination for top talent. More in @theglobeandmail.com: https://tgam.ca/3QNDopF @uhnresearch.ca

Fascinating project to recognize and learn from "the deep, hard-won practical wisdom that patients develop through years of living with their conditions." Applies equally well to chronic cancer conditions, long-term #survivorship #cansky #patientengagement

More is not More. Except when it comes to the added toxicity. #QoL #kidneycancer Thank you @yukselurun.bsky.social

This work in #shareddecisionmaking in #kidneycancer uncovered unique country-level barriers influencing HCPs: eg.,..."not all major treatment options were always presented, often influenced by resource limitations and financial incentives favouring surgery"

Fantastic international work on #shareddecisionmaking in #kidneycancer Research powered by patient evidence, HCP interviews and the passion to do more so that all patients have a voice. Well done team! @ikccorg.bsky.social @uroweb.org #EAU26

Tons of respect for patient advocate Joyce Graff and all she has done for the #VHL and #kidneycancer communities globally. Was instrumental with @ikccorg.bsky.social with connections around the world. Thank you @smartpatients.bsky.social

That third point. Amazing that it has to be said, but yes. In an era of #shareddecisionmaking, patient preferences require a thoughtful discussion of patient goals, expectations, risk tolerances. What matters most to you? #GU26

At the German Cancer Congress last week, Karin Kastrati presented about the CARE1 Pragmatic Clinical Trial. We’re proud to support this important work. #KidneyCancer

Really an excellent example of how country-specific data within the @ikccorg.bsky.social Global Patient Survey can identify variances, gaps, and work to address unmet needs for patients with #kidneycancer I hear Canada made a similar presentation recently at Canadian research meeting. Good to hear

Kudos to @htaiorg.bsky.social and the Patient and Citizen Involvement group (PCIG), book editors and the many contributors. This is quite the comprehensive volume on #HTA with many global perspectives. #patientengagement #healthtechnologyassessment #globalhealth

New open access book “Patient Involvement in Health Technology Assessment” has just been published (Jan 2026) on link.springer.com/book/10.1007.... @htaiorg.bsky.social @ippin.bsky.social

"Canada thrives because We Are Canadian". 🍁 💪

This is important. Please share. "What do Ontario NDP, Liberal and Green MPPs have in common? Pharmacare... ...This morning, we sent a letter to the Premier and Minister Jones calling on our province to join the national plan for birth control and diabetes." #OnPoli #OnHealth

Fantastic work to improve standards for Patient Reported Outcomes, QoL across #clinicaltrials for all types of #cancer. Toolkit will be welcomed by patient advocates globally. We can and must do better for patients than "well tolerated". Two words that carry little meaning. #oncsky #cansky

Interesting study re reducing risk of #kidneycancer in general population and amongst higher risk groups. One more piece of prevention puzzle? So many confounding factors...dietary recall a big one IMHO. #cansky

We talk about survival, Patients talk about life. We must learn patients’ language…

An important read from @thelancetoncol.bsky.social that will resonate with patient orgs and cancer patients and caregivers globally. Towards a more human-centred approach that allows for compassion, psychological support, dignity. Bravo! #cansky #shareddecisionmaking #Qol

IKCC kindly invites you to complete the survey by Friday, 7 November 2025. It takes less than three minutes. forms.office.com/Pages/Respon... @GlobalCCN_org (2/2)

LAST CHANCE TO PROVIDE YOUR OPINION. Following an event at #ESMO25 in Berlin, the Global Cancer Coalitions Network (GCCN) and Ipsen are running a survey on Shared Decision-Making in Oncology. (1/2)

More for Dark Age 2.0... Scientists had to change more than 700 grant titles to receive NIH funding. www.statnews.com/2025/10/29/n... "They are trying to make people afraid to use the word ‘equity.’ They’re trying to make people afraid to use the term ‘transgender.’"

Congrats to @uiccofficial.bsky.social and 88 international authors for this new educational resource. Pleasure to join the panel today to represent cancer patients, advocates, charitable orgs. Moderated by the insightful @avisfavaro.bsky.social #carrythefire #princessmargaretfoundation #Cancer

Anyone else want this unsolicited garbage to stop being sent in the mail? This from the "Cancer Research Society" in Ottawa. Huge envelope. Junk. Socks. Gloves. Returning it all. #cancer #fundraising cancerresearchsociety.ca?gad_source=1...

Really an incredible resource for cancer patients. Discussion of evidence, clinical trials, real world toxicities. And support/moderation that keeps misinformation off the platform. #cansky #kidneycancer

A powerful essay on being "a difficult patient" and the grace we seek as we come to terms. Applicable to many here in the #cansky community (And #kidneycancer for sure.)

Gotta love the "Stupid Tariffs" tip jar at my local coffee shop. Made the coffee taste even better! #Guelph #shoplocal #planetbean #coffee #elbowsup #stupidtarrifs