Advocacy Opportunities

Ways to Get Involved

Welcome to NCCS’s Advocacy Opportunities page, your go-to resource for staying informed about the latest engagement opportunities in the cancer community. Whether you are a patient, survivor, caregiver, or advocate, there are many ways you can get involved and make a difference.

This page provides a list of upcoming events, webinars, conferences, and advocacy campaigns from NCCS and other leading cancer organizations. From policy initiatives and surveys to educational webinars, there are opportunities for everyone to get involved.

At NCCS, we are committed to providing resources and support to those who want to make a difference. Whether you are looking to volunteer your time, share your story, or advocate for change, we are here to help.

Browse our list of advocacy opportunities today and find your perfect way to get involved.

NCCS EVENTS

Reconnecting to Life After Cancer: Permission to Feel

In-Person Conference

Join NCCS for a CPAT webinar featuring Kathy Washburn, a certified holistic cancer coach and cancer survivor. In this webinar, you will learn the evolutionary function of both positive and negative emotions, understand that emotions offer data, and learn how to begin to practice awareness to empower you to respond — instead of react — to life.

Note: This class is life coaching not therapy and may not be appropriate for those experiencing significant and persistent emotional challenges.

Tuesday, December 5, 2023
12:00 PM – 1:00 PM ET

Register Here »

COMMUNITY OPPORTUNITIES

ReVital Cancer Rehabilitation: Survivor Series – The Importance of Being Your Own Advocate

Research Study

Tuesday, December 5, 2023
2-3pm EST

ReVital Cancer Rehabilitation invites you to join them for the upcoming session in the Living Well Beyond Cancer Survivor Series on Tuesday, December 5, 2023, from 2 – 3 p.m. EST. Amanda Hodges, BSN, R.N., OCN, will be joined by friends from NCCS and ReVital patient Ari to discuss the importance of self-advocacy in cancer care and beyond.

Register Here.

NCCN: Paient Advocacy Summit

Research Study

Tuesday, December 5, 2023
In-Person or Virtual

The National Comprehensive Cancer Network® (NCCN®) is pleased to present the 2023 Patient Advocacy Summit entitled Navigating the Care Continuum from Screening through Survivorship. As a component of this summit, NCCN conducted an environmental scan of the current oncology landscape through a variety of stakeholder meetings to discuss the prevailing challenges and opportunities to meet the needs of patients and caregivers along the care continuum. With content derived from key themes identified in the scan, this year’s Patient Advocacy Summit will provide an opportunity for a varied group of stakeholders including patients, providers, payers, patient advocacy organizations, and industry to thoughtfully discuss the current gaps, challenges, opportunities, and best practices for patients with cancer as they navigate complex care systems from screening and diagnosis through survivorship and end of life care. The Summit will address issues associated with care transitions including from screening to diagnosis and from treatment to survivorship, disparities according to health coverage and social determinants of health, and best practices to assist patients including care coordination, patient navigation, digital innovations, and programs offered by patient advocacy organizations. The summit will also highlight practice and policy solutions needed to improve seamless care access and ultimately care outcomes for patients.

Register Here.

NCI: Office of Cancer Survivorship – Developing National Standards for Cancer Survivorship Care

Research Study

As part of the Biden Administration’s Cancer Moonshotsm and the President’s Cancer Cabinet, the National Cancer Institute (NCI) and Veterans Affairs (VA), in collaboration with several other Department of Health and Human Services agencies, are developing national standards for survivorship care. The goal of this project is to define standards for (1) essential health system policy and process components of survivorship care programs; and (2) evaluation of the quality of survivorship care.

To develop these standards, NCI and VA will hold three virtual meetings with survivorship subject matter experts to rate the importance of potential indicators for the survivorship standards and to prioritize the most important and feasible indicators in three domains: health system policy, health system processes, and evaluation.

The meetings will be held November 29, December 6, and December 12 from
2-3 p.m. ET. A general overview of each session is below. While participation in these meetings is by invitation only, we invite you to view the discussion live at the links below, where there will be an opportunity to provide comments to the working group.

  • Meeting 1: November 29, 2023, 2:00 p.m. – 3:00 p.m. ET https://nci.rev.vbrick.com/#/webcasts/nationalsurvivorship-pcpday1
    Background information; introduction to the project; individual polling to rate the importance of each survivorship indicator; and identify other indicators for consideration and rating
  • Meeting 2: December 6, 2023, 2:00 p.m. – 3:00 p.m. ET https://nci.rev.vbrick.com/#/webcasts/nationalsurvivorship-pcpday2 
    Presentation of Meeting 1 poll results and the edited list of possible indicators; open discussion; individual polling to identify the five most important indicators within each domain
  • Meeting 3: December 12, 2023, 2:00 p.m. – 3:00 p.m. ET https://nci.rev.vbrick.com/#/webcasts/nationalsurvivorship-pcpday3
    Presentation of Meeting 2 poll results and top prioritized indicators; open discussion on which indicators are a priority, are feasible, and are achievable to implement within a healthcare system; finalize individual polling to rank the five most important indicators within each domain

After the meetings, the Survivorship Standards Working Group will collate the results to finalize the standards for dissemination. These standards will be piloted in VA National TeleOncology and will be available for implementation in other healthcare settings, including (but not limited to) cancer centers.

The After Cancer – Self-love during the Holidays

Research Study

Tuesday, December 12, 2023

“Self-love During the Holidays” – Free Webinar session for breast cancer patients.

Join Wellness Coach Cheryl Lecroy to learn more about self-love during the holdays.

Register Here.

NCI: Office of Cancer Survivorship – Understanding and Optimizing Social Support Across the Cancer Care Continuum

Research Study

Tuesday, January 23, 2024
2:00 PM – 3:00 PM EST
Join the NCI Office of Cancer Survivorship (OCS) for this OCS Director’s Series webinar on January 23. Dr. Elizabeth Bouchard will present Understanding and Optimizing Social Support Across the Cancer Care Continuum.

Speaker:

Elizabeth Bouchard, PhD, MA
Professor of Oncology
Senior Vice President and Associate Director
Community Outreach and Engagement
Roswell Park Comprehensive Cancer Center

Intended Audience:

Researchers, advocates, clinicians, and policy makers interested in cancer survivorship.

NCI: Office of Cancer Survivorship – Director’s Series – Global Survivorship Care: Common Challenges, Common Solutions

Research Study

Tuesday, February 13, 2024
2:00 PM – 3:00 PM EST

Join the NCI Office of Cancer Survivorship (OCS), in partnership with the NCI Center for Global Health, for this OCS Director’s Series webinar on February 13. Dr. Enrique Soto Pérez de Celis will present Global Survivorship Care: Common Challenges, Common Solutions.

Speaker:
Enrique Soto Pérez de Celis, MD, PhD, FASCO
Department of Geriatrics
Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán in Mexico City

Intended Audience:
Researchers, advocates, clinicians, and policy makers interested in cancer survivorship.

Register Here.

UCLA Come talk about your experience with heath insurance! Participants needed for a UCLA-funded research study to understand cancer survivors' experiences with health insurance. Findings will inform development of a video game aimed at helping cancer survivors navigate health insurance. Am I qualified? Are you currently between the ages of 18-46? Were you between the ages of 18-39 when you were told by a provider that you had cancer? Can you speak and understand English? ...If you answered yes to all of the above, you may be eligible to participate in our research study. How can I participate? Share your experience navigating health insurance during your cancer journey via a brief confidential Zoom focus group session Receive a $100 gift card for your participation For more information, please click here or contact: Jessica Obidike, MPH Research Coordinator: JObidike@mednet.ucla.edu Scheduling focus group sessions for Summer 2023 === Please respond quickly to reserve your spot! IRB#22-001904

UCLA: Health Insurance Experience Study

Research Study

Participants are needed for a UCLA-funded research study to understand cancer survivors’ experiences with Health Insurance. Interested in participating? Scan the QR code in the flyer or email JObidike@mednet.ucla.edu.

Have you completed cancer treatment, but still have trouble falling asleep or sleeping through the night? Learn about research studies at the Dana-Farber Cancer Institute for survivors with insomnia. Two sleep education programs are being tested. Studies are offered completely online. No medications are involved. Learn more on the back!
Sleep Treatment Education Program-YA For ages 20-39 Participation Includes: A single online session teaching survivors how to improve their sleep. Some participants will receive additional coaching sessions. Completing brief questionnaires online at several time points after the session. Sleep Treatment Education Program-1 For ages 40 and older Participation Includes: A single online session teaching survivors how to improve their sleep. Participants are randomized to behavioral education or relaxation education. Some participants are offered coaching sessions and an additional questionnaire. Completing brief online questionnaires at several time points after the session. (617)582-8260 STEP@dfci.harvard.edu STEPforsleep.com

Step for Sleep Research – National Cancer Institute Funded Studies

Research Study

STEP (Sleep Treatment Education Program) currently has two active insomnia studies.

Learn more about participating in these sleep treatment education programs here »

Ulman Foundation – Cancer to 5K

Training Program

Cancer to 5K provides a community of support for cancer survivors through a free 12-week training program. The team will practice twice a week, one weekday and one weekend day, for 12 weeks.

Regardless of age, treatment status, or physical ability, survivor participants run/walk alongside coaches & volunteer teammates with the ultimate goal of completing a 5K goal race. While everyone’s cancer journey is different, many individuals can benefit from a weekly exercise routine.

Take your life back from cancer… one mile at a time!

Learn more here »

Baylor University — AYA Research Opportunity

Research Study

Baylor University is inviting individuals who are Adolescent and Young Adult (AYA) cancer survivors to participate in a research study about the care they received. This study is specifically for AYA patients who were diagnosed with cancer between the ages of 15 to 39 and are now 18 years of age or older. The questionnaire will take around 10 minutes to complete. Kindly use the provided questionnaire link below:

https://baylor.qualtrics.com/jfe/form/SV_9Hzz3LDmoWL3jGC

For more information, contact rebecca_munoz1@baylor.edu »

National Cancer Plan

Digital Toolkit

The National Cancer Institute’s (NCI) Nation Cancer Plan now has a Digital Toolkit for advocates and advocacy organizations that would like to show support for the National Cancer Plan.

Learn more and get involved here »

American Society of Clinical Oncology (ASCO)

Online Training

Would you like to learn more about American Society of Clinical Oncology (ASCO) cancer survivorship care guidelines? Look no further than the GW Cancer Center’s free, on-line training! It will introduce you to guidelines addressing chemotherapy-induced peripheral neuropathy management, fertility preservation, and osteoporosis management in adult survivors with nonmetastatic disease.

Sign up today »

Survey Opportunity — Providers and Adult Cancer Survivors

Survey Opportunity

The University of South Carolina invites you to participate in a study to better understand stakeholders knowledge related to cancer related fatigue. This study is for healthcare providers who treat those with cancer or adults with a current or previous diagnosis of cancer.  The survey will last approximately 5 minutes. Please use the appropriate survey link provided below:

Healthcare provider:

https://redcap.healthsciencessc.org/surveys/?s=EJ38EWJD3NTNXDL4

Adult with a current or previous cancer diagnosis:

https://redcap.healthsciencessc.org/surveys/?s=3YM7CJTK7PFFE4ET

Adler University — Couple and Family Therapy

Research Study

Growing up, did you have a sibling who was diagnosed with pediatric cancer? Do you ever wonder how this impacted your relationship with your sibling? How close are you with your sibling?  

For the 78% of us who grew up with siblings, this relationship can have a significant impact on our identity, development, and life experience.  Siblings of pediatric cancer patients experience unique consequences both positively and negatively by this diagnosis but too often their needs and concerns are unrecognized or inadvertently neglected during a time when they also need support.  If you were a well sibling to a child with cancer, researchers at Adler University want to hear about your sibling experience during this time.

Participants will receive a $25 Amazon Gift Card.

If this sounds familiar to you and your experience as a sibling, you may qualify to participate in an exciting new research study: The Impact of Sibling Cancer Diagnosis on the Sibling Relationship

Learn more here

Paid Survey — Survivors Age 18 – 25

Survey Opportunity

The Psycho-Oncology Lab at Hunter College (CUNY) is seeking research participants for a paid survey study. Earn $15 for participation.

To see if you are eligible, complete the online screener here: https://tinyurl.com/SPICE-Phase2-Screener