Patient Advocacy

The past decade has shown tremendous advances in the care of patients with lung cancer. With improved survival comes the opportunity for patients to become survivors who advocate for research by attending conferences, forming relationships with physicians and care providers, and lending their voices through committee involvement and speaking opportunities. The IASLC offers several opportunities to help transform patients into patient research advocates.

Spotlight

A Serendipitous Journey to Patient Advocacy

I remember how hard it was over those weeks not to start treatment. At the time, with my very limited understanding, it was so frustrating but in hindsight, I realize that it was the wisdom of my oncologist.

IASLC Language Guide

The following Language Guide has been developed by members of the IASLC to provide guidelines on best practices with common phrases used during presentations at IASLC conferences and within submitted abstracts.

Download the Language Guide

At the IASLC CT Screening Symposium: Forefront Advances in Lung Cancer Screening, Advocate Andrea Borondy-Kitts gave a patient perspective on CT Lung Screening, including the challenges for patients, false positive rates for CT lung screening, and patient first language. Watch her presentation.

Advocates at Work

Awareness-raising Bike Ride in The Netherlands Connected Hospitals, Patients

Patients and supporters cycled nearly 1,150 kilometers through The Netherlands on May 21, 2021 in a “White Ribbon Tour” to raise awareness for lung cancer.

Lung Cancer Screening for Women: Understanding the Risks and the Benefits

Although science has proven that both men and women significantly benefit from lung cancer screening by low-dose CT, the NELSON study showed that women benefit substantially more than men.

Raising Awareness about Lung Cancer Screening among Minorities, People Who Smoke

Minorities are at significantly higher risk for developing lung cancer than whites, even with the same smoking history.

Patient Advocate Comment: Amivantamab for Exon 20

Amivantamab for Exon 20-Related NSCLC: Excitement in the Patient Community

Cultural Perceptions of End-of-Life Communication

Palliative and end of life care discussions are significant and essential, yet sensitive and challenging.

Comparing Patient-Reported Outcomes in the CROWN Study

The abstract suggests that multiple measures of health-related quality of life while taking lorlatinib and crizotinib are not meaningfully different.

Patient Comment on Mobocertinib for Exon 20

My brother Kevin, who founded the Exon 20 Group at ICAN with me in early 2017, started on mobocertinib (TAK-788) in late Spring of 2017.

FDA’s Project Patient Voice Launched to Provide Data on PROs

In 2020 the U.S. Food and Drug Administration (FDA) launched Project Patient Voice, an online platform for patients and caregivers along with their health care providers to look at patient-reported symptom data from cancer clinical trials.

Lung Cancer Health Care Delivery, Community Building, and Research: Are They Truly Inclusive?

Despite the advancements in research and treatment for lung cancer, there are still vast disparities across the cancer care continuum, both in the United States and worldwide.

Ivy Elkins on Abstract 3800

Ivy Elkins on overall care and fear to to COVID-19

Watch Here

Ivy Elkins on Abstract 3384

Ivy Elkins on patient support during COVID-19

Watch Here

Ivy Elkins on Abstract 3614 final

Ivy Elkins on prehabilitation study to improve patient health

/world-conference-lung-cancer-videos

Ivy Elkins on Abstract 3700

Ivy Elkins on COVID-19's impact on lung cancer mortality

Watch Here

Mary Hesdorffer, NP, Real World Survival Outcomes in MPM

Mary Hesdorffer, NP on real-world survival outcomes in MPM

Watch Here

Mary Hesdorffer on OAO9: Nivolumab in Recurrent MPM in the Netherlands

Mary Hesdorffer, NP on patients with pleural meso w/Nivo response in the Netherlands

Watch Here

Mary Hesdorfer, NP, on Poster 24.01

Mary Hesdorffer, NP on real-world survival outcomes in MPM

Watch Here

Whole Exome Sequencing Reveals Potential Role of Hereditary Predisposition in SCLC

Dr. Upal Basu Roy on germline mutations in SCLC

Watch Here

Jill Feldman Diversifying Clinical Trial Inclusion Criteria Current Challenges & Potential Solutions

Jill Feldman discusses the need for diversifying clinical trial inclusion criteria, the challenges surrounding current criteria, and potential solutions.

Watch Jill Feldman's Presentation

Advocacy Opportunities for IASLC Members

Cancer Care Team Award

Nominate your care team for outstanding provision of care.

Explore More

STARS

Learn how to read journal articles, understand clinical trial design, and communicate effectively with scientists and physicians regarding novel research. Apply to STARS today.

Learn More

Patient Advocate Committee

Apply for a position on the IASLC Patient Advocate Committee.

Apply Now

Pair Up With an IASLC Patient Advocate Partner

Contact us at [email protected] to be paired with an advocacy group based on your patient story.

Become a Member

Contact us about the complimentary membership for patients and advocates.

Apply Now

We proudly partner with 13+ advocacy organizations to advance the care of patients with lung cancer in patient-driven ways that focus on quality of care and quality of life.

Tools for Advocate Involvement

Journals

Learn about novel research and clinical care advances.

Learn more

Featured Meeting

Learn about novel research and clinical care advances.

Explore now

Share Your Story of Your Patient Research Advocate Journey

Learn about novel research and clinical care advances.

Share

Interested in Learning More with the IASLC for Advocacy Efforts/Program?

Interested in Learning More about the IASLC's Advocacy Programs? Contact us at [email protected] to meet our advocacy-focused staff, share your story, and learn more about advocacy opportunities

Contact Us Now!

Give Five!

The International Lung Cancer Foundation is excited about our newest donation functionality: recurring monthly donations! Donors now have the option to make their donations monthly recurring donations with just a few clicks of their mouse.

To help kick off our recurring donations program, we’re asking YOU to give five: $5 (or more!) each month for the next five months (or more!). If 5% of our members (approximately 400 people) gave five, we would raise USD 10,000 to inspire hope through research. Every dollar donated to the ILCF supports our Research Awards program, a global education initiative providing Fellowships and Young Investigator Awards that fund innovative research in lung cancer.

Give Five Today!