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Advocates for Collaborative Education @advocatecollab.bsky.social · 15/09/2025

Join us tomorrow for a #SaveRareCancerResearch toolkit presentation by ACE member Dana Deighton. If you're an cancer advocate but not already a member of ACE, we'd love to have you - learn more at advocatecollaborative.org

Image of the home page for advocates for collaborative education

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Advocates for Collaborative Education @advocatecollab.bsky.social · 11/09/2025

Fabulous conversation today around advocacy expertise and compensation in our monthly meeting! Excited to gather additional perspectives and share those insights to strengthen the role of patient advocacy across community, research, industry, and policy work. #CanSky #OncoSky #PatientAdvocacy

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Advocates for Collaborative Education @advocatecollab.bsky.social · 08/09/2025

Patient advocates are generally underutilized in research and definitely under compensated - this will be a topic of discussion and exploration in our next general meeting on September 11th 10amPT/1pmET - invites should be in your inboxes!

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Advocates for Collaborative Education @advocatecollab.bsky.social · 08/08/2025

Our next general meeting is August 14th 10amPT/1pmET - invites should be in your inboxes! If you're a patient, research, policy, community advocate - or thinking about exploring cancer advocacy - please consider joining us. All cancers, all stages, all experiences welcome. forms.gle/DrRyEKJG2JJ6...

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Advocates for Collaborative Education @advocatecollab.bsky.social · 15/07/2025

Join us for a mid-summer update on our projects, our publications & presentations, our sponsors, and ways you can become more involved in @advocatecollab.bsky.social All members should have an invite for July 17th at 10amPT / 1pmET. If you're not yet a member, join us here forms.gle/VWT7MZHEc5qh...

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Reposted by Advocates for Collaborative Education

Stacey Tinianov, MPH @coffeemommy.bsky.social · 27/06/2025

"Common and uncommon toxicities: Perspectives and solutions from patient partners" Excited to hear from @scottcapozza.bsky.social @evaschumacherwulf.bsky.social @doublewhammied.bsky.social & others And then to share our @advocatecollab.bsky.social research #MASCC25

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Advocates for Collaborative Education @advocatecollab.bsky.social · 12/03/2025

Thank you Karen for sharing more about the value of (and need for) DPD deficiency testing prior to treatment with Fluorouracil (5-FU) and/or Xeloda (Capecitabine) with our members. Anyone can learn more at test4dpd.org #crcsm #bcsm #pancsm #CanSky #OncSky

test4dpd.org

Test for DPD Deficiency before starting Chemotherapy using fluoropyrimidines

Testing serves to save lives of patients with colorectal, breast, head/neck cancer patients treated with fluorouracil or capecitabine.

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Advocates for Collaborative Education @advocatecollab.bsky.social · 05/03/2025

REMINDER to @advocatecollab.bsky.social members: Please join us tomorrow 3/6 at 10amPT/1pmET for a presentation by Karen Merritt on the DPYD gene and the value of, and the need for, DPD deficiency testing before fluoropyrimidine chemotherapy #CanSky #OncSky #PatientAdvocacy

Image of a magnifying glass over what looks to be a heat map with a white bubbly version of a double helix showing through

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Advocates for Collaborative Education @advocatecollab.bsky.social · 20/02/2025

Reminder we are hosting a Town Hall today for @advocatecollab.bsky.social members at 10amPT / 1pmET to discuss impacts of the new administration on our advocacy. What we know, what we still need to find out, and how best to move forward. #CanSky #OncSky #PatientAdvocacy #CancerResearch

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Advocates for Collaborative Education @advocatecollab.bsky.social · 04/02/2025

So grateful to see our board secretary on The Hill amplifying the messages of the cancer community on this #WorldCancerDay #UnitedByUnique and #UnitedInUrgency #CanSky

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Advocates for Collaborative Education @advocatecollab.bsky.social · 28/01/2025

Gentle reminder to advocates everywhere: We EXIST as patient, community, research, and policy advocates because the system(s) didn't meet everyone's needs, because science was moving too slowly, because the process didn't include adequate representation. In other words, we do hard shit all day long

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Advocates for Collaborative Education @advocatecollab.bsky.social · 16/01/2025

DYK when you google Medical Aid in Dying or Death with Dignity, the first search item that pops up is the National Suicide Hotline? Please join us today for an ACE conversation with advocate @amjohnston.bsky.social about what Medical Aid in Dying really involves & why it exists #CanSky #PallOnc

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Advocates for Collaborative Education @advocatecollab.bsky.social · 14/01/2025

REMINDER: ACE Meeting on cancer vaccines today 1pmPT / 4pmET. Join us to hear from advocate & ACE member Judy Fitzgerald as she shares her experience as an advocate on current vaccine trials. As always presentation will be short so bulk of the time can be spent on Q&A / discussion #OncoSky #Advocacy

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Advocates for Collaborative Education @advocatecollab.bsky.social · 06/01/2025

Wonderful to kick off the new year by reconnecting with some of our advocates to discuss the evolution of the organization, upcoming presentations, and continued needs across patient, research, and policy advocacy. #CanSky #OncoSky

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Advocates for Collaborative Education @advocatecollab.bsky.social · 16/12/2024

True shared decision-making requires education and includes informed discussion on risks/benefits as well as IMPACT on quality-of-life. #CanSky #OncoSky #QoL

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Reposted by Advocates for Collaborative Education

Stacey Tinianov, MPH @coffeemommy.bsky.social · 14/12/2024

Spent 90 mins on the #SABCS24 stage, interjecting the advocacy perspective in "From the Trenches" yesterday. It was these voices, and so many others not pictured, that I channeled. Grateful to have them by my side literally & figuratively 💗

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Reposted by Advocates for Collaborative Education

Kelly Shanahan @stage4kelly.bsky.social · 13/12/2024

Love, love, LOVE how #advocate extraordinaire @coffeemommy.bsky.social of @advocatecollab.bsky.social reminds the moderator, the panel, and the audience that #WordsMatter - “deescalation” sounds like “you don’t matter, we’ll do less” so preferred terminology is “right-sizing”. #SABCS24

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Advocates for Collaborative Education @advocatecollab.bsky.social · 06/12/2024

We finally made it to Instagram! We meet virtually, but every now and again, the stars align, and some of us can connect at events in person! In honor of our first IG post, here is a throwback to our first face-to-face at ASCO in 2023 🎉 #CanSky #PatientAdvocacy www.instagram.com/advocatecoll...

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Advocates for Collaborative Education @advocatecollab.bsky.social · 06/12/2024

Are you a #cancer Patient, Research, Policy or Community advocate? Are you a person diagnosed w/ (or history of) cancer interested in advocacy but not sure where to start? We need your voice & would love to have you join us! #Cansky #oncosky #patientadvocacy advocatecollaborative.org/join-us/

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Advocates for Collaborative Education @advocatecollab.bsky.social · 03/12/2024

It's our first #GivingTuesday as a non-profit 🎉 At Advocates for Collaborative Education, we are on a mission to unite and empower advocates through pan-cancer collaborations, advocacy education, and the sharing of best practices. If you're so inclined, we would love your support! #PatientAdvocacy

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Reposted by Advocates for Collaborative Education

Janet Freeman-Daily @jfreemandaily.bsky.social · 22/11/2024

Check out @advocatecollab.bsky.social. They have a list of cancer advocates who are now on bluesky. #oncsky

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Advocates for Collaborative Education @advocatecollab.bsky.social · 15/11/2024

Slow pace of publication can inhibit dissemination of good science. Enter ASCO Living Guidelines "developed for selected topic areas with rapidly evolving evidence that drives frequent change in recommended clinical practice" Here's one for NSCLC w/ driver alterations #lcsm #oncsky #oncosky

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Advocates for Collaborative Education @advocatecollab.bsky.social · 14/11/2024

New platform, same level of advocate awesomeness. We just had a post-election conversation to talk about biggest personal concerns, biggest advocacy concerns, and how we will approach things at risk under this next administration #oncosky #bcsm #crcsm #btsm #gyncsm #lcsm #CancerResearch #SurvOnc

Image of twelve kickass cancer patient, research, and policy advocates. Smiling, despite the realities because we are building plans!

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Advocates for Collaborative Education @advocatecollab.bsky.social · 12/11/2024

A good start as we try to rebuild our learning / sharing communities here (now #OncoSky was #MedTwitter) #bcsm #crcsm #btsm #lcsm #gyncsm #thyca #ayacsm #mmsm #cancer #QoL #PatientAdvocacy (Is #OncoAlert coming this way?!)

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Advocates for Collaborative Education @advocatecollab.bsky.social · 12/11/2024

ATTN Advocates: We will be hosting an extended ACE call on Thurs 11/14 Agenda: 1.) check in on everyone 2.) discuss how we want to collectively approach this next year (including preparing for significant attempts to alter healthcare coverage and access) #bcsm #crcsm #gyncsm #lcsm #mmsm #cancer

little yellow cartoon chick on a light blue background with the words "hey, just checking in!" written in black

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