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

Agree with assessment that a global organisation would be best positioned. For #kidneycancer we built a global search, updated every 24 hours. But clinicaltrials.gov API changed, crawler code no longer worked. It's a huge undertaking. Any success stories out there? Pan-national.
#clinicaltrials

2. Trial descriptions should disclose dose and schedule information of all drugs involved. Have seen this withheld by manufacturers as "competitive information". How does a patient weigh up toxicity, #Qol without knowing?
#clinicaltrials

Couple of additions to your frustrations from another non-US patient:
1. All trials should list locations in real world terms, not manufacturer secret language such as "site 21". We patients need to see which major cancer centres (and investigators) are participate. (1/2)
#clinicaltrials #cansky

Nice. Is it unsupported because it showed mixed results? Lack of cost-effectiveness? Or is it just not supported by any evidence?
#cansky

The uncomfortable truth about medical crowdfunding in New Zealand New research into online crowdfunding for healthcare reveals some worrying trends around which campaigns are deemed 'worthy'.

More on this from NZ:
thespinoff.co.nz/society/16-0...
#cansky

Agree with this opinion that the platforms themselves eg, GoFundMe) have a role to play:
www.ualberta.ca/en/folio/201...
#cansky

Agree, you shouldn't.

But even in countries with fully funded universal healthcare, we see these GoFundMe campaigns. Often for non-evidence based care, alternative treatments in private clinics in Mexico, Germany. Sad to see.

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"

Thanks for sharing. Beautifully written. The term "chronic terminal" resonates with many of us living scan to scan with stage iv cancer. One foot in each world. Many of us in uncharted territory.
#survivorship #cansky

One practical recommendation would be to follow respected international guidelines. Eg., for #kidneycancer the European Urology Guidelines which have a rigorous evidence-based process, also EMA (vs FDA alone). Look for variances etc.

Just letting you know that someone in Canada appreciates your sense of humour...

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

I think the way you win is to survive... and to live a full life as healthy as you can be.

Perspective of a long-time #kidneycancer survivor...not NED.
Wish you well.

Onwards indeed Sid. I wish there was wisdom to share to make this easier.

One aspect of #kidneycancer care that has been under-appreciated is the huge psychological burden across all stages of disease. The NEDs, the CRs report equally high levels of distress, fear of recurrence...
#scanxiety

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

Especially in the US where DTC (Direct to Consumer) drug marketing is rampant... one of only 2 countries where DTC is legal. The other one, surprisingly... is NZ.

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

Couldn't stomach listening to speech. But loved this:

“Our stock market took the first dip yesterday because of Iceland, so Iceland’s already cost us a lot of money,” he said.

Carney claps back after Trump says "Canada lives because of the US” YouTube video by Global News

"Canada thrives because We Are Canadian". 🍁 💪

PM Mark Carney speaks at World Economic Forum in Davos – January 20, 2026 YouTube video by cpac

The Mark Carney Davos speech that everyone is talking about: www.youtube.com/watch?v=uStu...

The speech that rang around the world.

#MarkCarney
#Davos
#Canada

What should I be doing?
Keep going!
One step at a time.
And definitely celebrate the wins along the way -- they balance out other moments of uncertainty.
#cansky #stage4

Brilliant. "Not bravery. Not optimism. Familiarity. Learning the terrain well enough that fear no longer had the upper hand"

Thank you for sharing.
#cansky #survivorship #oncsky

I'd like to leave the cancer behind. Period.
#cansky
#survivorship
#hope

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