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Advocates for Collaborative Education @advocatecollab.bsky.social · 24d

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

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Advocates for Collaborative Education @advocatecollab.bsky.social · 28d

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 · Sep 8

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 · Aug 8

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 · Jul 15

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 · Jun 27

"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 · Mar 12

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

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Advocates for Collaborative Education @advocatecollab.bsky.social · Mar 5

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 · Feb 20

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 · Feb 4

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

#UnitedByUnique and #UnitedInUrgency #CanSky

Roberta A Albany @raalbany.bsky.social · Feb 4

#NBCContheHill @nbccstopbc.bsky.social #breastcancer #advocacy #stageivbreastcancer #worldcancerday

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Advocates for Collaborative Education @advocatecollab.bsky.social · Feb 4

#WorldCancerDay
#UnitedByUnique #UnitedInUrgency #CanSky #OncoSky

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Advocates for Collaborative Education @advocatecollab.bsky.social · Jan 28

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 · Jan 17

Hi there Ginny, link was in the invite - we missed you. Will follow up via email.

Advocates for Collaborative Education @advocatecollab.bsky.social · Jan 16

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 · Jan 14

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 · Jan 6

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 · Dec 16

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

Kelly Shanahan @stage4kelly.bsky.social · Dec 11

“Its not shared decision making if we [patients] are not informed” @amybeumer #SABCS24

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Reposted by Advocates for Collaborative Education

Stacey Tinianov, MPH @coffeemommy.bsky.social · Dec 14

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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Advocates for Collaborative Education @advocatecollab.bsky.social · Dec 16

ICYMI
"We must rethink how we define progress in oncology"
#Oncosky #Cansky #Pallonc

Jill Feldman @jillfeldman4.bsky.social · Nov 25

Innovation shouldn't come at the expense of patient-centered care!
Great article about prioritizing what matters to patients (QOL/OS/⬇️ burdens). It underscores palliative care being viewed as essential, not ancillary.
We must rethink how we define progress in #oncology
#pallonc #LCSM
bit.ly/3OJQuQB

The trade-off between accelerated cancer drug approvals and patient preferences

Cancer care stands at a critical juncture where the urgency of rapid drug approvals must be balanced against the need for enduring patient-centric benefits. Robin Forrest and colleagues1 conducted a d...

bit.ly

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Reposted by Advocates for Collaborative Education

Darcy Burbage, DNP, RN, AOCN @darcyburbage.bsky.social · Dec 12

Thank you @coffeemommy.bsky.social !
#WordsMatter #oncsky #ListenToAdvocates @advocatecollab.bsky.social
#oncologynursing

Stacey Tinianov, MPH @coffeemommy.bsky.social · Dec 12

Advocacy makes a difference 🎉
A week ago I shared w/ Dr. Alistair Thompson that "right-sizing treatment" is preferred terminology to "de-escalation." Latter can imply 'less than" which, in absence of strong health/disease literacy, can be terrifying.
Today he shared that info his #SABCS24 preso

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Reposted by Advocates for Collaborative Education

Kelly Shanahan @stage4kelly.bsky.social · Dec 13

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 · Dec 6

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 · Dec 6

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 · Dec 3

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 · Nov 22

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

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