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Elevating the Patient Voice in Cancer Advocacy

Advocates for Collaborative Education is the only pan-cancer advocacy organization uniting patient, research, and policy advocates through pan-cancer collaborations, basic and advanced advocacy education, and the sharing of leading practices.

Sponsor Updates


We’re excited to share the latest highlights and milestones from the first half of 2025. Your partnership is enabling a powerful movement where patients, researchers, community, and policy advocates are shaping the future of science and health policy.


Here’s what we’ve accomplished together in 1HFY25:


Education:

Educated patient, research and policy advocates on the following topics:

  • Medical Aid in Dying (MAiD)
  • Cancer Vaccines
  • DPYD Deficiency & Testing
  • ZIP7 protein as potential druggable target in cancer
  • Ongoing changes to research and coverage based on new administration

Hosted three (3) new member welcome seminars to bring new faces and voices into the world of advocacy


Projects:

Continuing to expand data analysis on More Than A Diagnosis (MTAD) Study

Launched advocate-led projects focused on:

  • Advocacy Expertise and Compensation Survey
  • Co-creation of a shared decision-making (SDM) toolkit
  • PRO registry bladder cancer


Publications:

  • Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study (Allison Rosen)
  • "Nailing down" risk and improving outcomes in early-stage breast cancer (Stacey Tinianov)


Presentations:

  • MASCC Annual Meeting, Toxicities Workshop, faculty – Seattle, WA – June 2025
  • PDA Good Digital Manufacturing Conference 2025, Beyond Safety, Efficacy, and Compliance: the Human Impact of Digital Innovation” keynote speaker – Basel, Switzerland – May 2025
  • PMWC 2025, Measuring Tumor Aggressiveness: How Nanotechnology is Shaping the Future of Cancer Diagnostics, panelist – Santa Clara, CA – February 2025


These achievements are proof that when advocates lead, progress follows.


What’s Ahead



Looking forward, here’s what’s coming up:

  • ACE Innovation Hour – “Stiffness Matters” The Physical Properties of Solid Tumor Cancers REGISTER – November 20, 2025


Current Projects

Advocacy Expertise and Compensation


ACE is interested in gathering a better understanding of the advocacy community's expertise, related compensation experience, current and future advocacy interests. Advocates are generally underutilized in research and definitely under compensated. This survey seeks to understand the experiences and interests of advocates with a potential long-term goal of creating a database of advocates to be matched for compensated roles.
Participate in the Survey

Your project here!


ACE is all about collaboration, and that include collaborating with other organizations and with industry.


Perhaps you're interested in a topic that requires input from advocates from a variety of cancer types. We'd love to explore the possibilities with you.


Explore with Us

More Than a Diagnosis

Existing QoL tools to do not adequately measure what people with lived experience feel contributes to or detracts from their QoL. More Than a Diagnosis: Quality of Life Survey was a response to the patient community’s frustration with current quality-of-life (QoL) measurement tools.


Results have been shared at the San Antonio Breast Cancer Symposium (SABCS), the Society of Clinical Oncology (ASCO) annual meeting, and at the Multinational Association for Supportive Care in Cancer (MASCC), and at ASCO Quality. Publications are in the works as well as an expansion of the survey.


Thank You to Napo Pharmaceuticals for providing this financial compensation to beneficiaries.
For More information
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Our Members


At last count, our members represent 22 different types of cancer and come from 30 US states and territories. In addition, we have members from Australia, Canada, Kenya, and several European countries.

Advocate Spotlights

Hillary Andrews, PhD. What’s the primary focus of your advocacy? Research advocacy – developing data that supports policies to get better drugs to patients faster as well as connecting advocates and patient advocates to improve research. More

Bob Riter: Much of what I do – and what I enjoy – relates to communication and building bridges. I love connecting researchers and patients/survivors and helping scientists communicate their research to non-scientists. More
A sincere thank you to our Corporate Sponsors

Your support makes our work possible
Contact us for more information about corporate sponsorship
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We depend on and appreciate our individual supporters as well.
Donate
 

Advocates for Collaborative Education | advocatecollaborative.org | Santa Cruz, CA 95062 US

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