Patient Advocacy

Amplifying the patient voice to improve the speed and quality of research. The IASLC is proud to support and partner with various patient advocacy groups, patient research advocates, and patient advocates from around the globe.
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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.

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A New Year’s Resolution to Promote the Use of Patient-Sensitive Language

With a greater number of empowered and involved patients, it is more necessary than ever for research to pay attention to the use of patient-sensitive language. 

Ivy Elkins and Terri Conneran

Advocates at Work

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

Dusty Donaldson

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

Dusty Donaldson

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

Marcia Horn

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

Cultural Perceptions of End-of-Life Communication

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

Comparing Patient-Reported Outcomes in the CROWN Study

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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

Robert Hanlon

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

IASLC Project Voice - Figure 1

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?

Disparities Figure

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

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

Ivy Elkins on Abstract 3384

Ivy Elkins on patient support during COVID-19

Ivy Elkins on patient support during COVID-19

Ivy Elkins on Abstract 3614 final

Ivy Elkins on prehabilitation study to improve patient health

Ivy Elkins on prehabilitation study to improve patient health

Ivy Elkins on Abstract 3700

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

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

Mary Hesdorffer, NP, Real World Survival Outcomes in MPM

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

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

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

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

Mary Hesdorfer, NP, on Poster 24.01

Mary Hesdorffer, NP on real-world survival outcomes in MPM-2

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

Whole Exome Sequencing Reveals Potential Role of Hereditary Predisposition in SCLC

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Dr. Upal Basu Roy on germline mutations in SCLC

Advocacy Opportunities for IASLC Members

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Cancer Care Team Award

Nominate your care team for outstanding provision of care.

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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.

Patient Advocate Committee

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Apply for a position on the IASLC Patient Advocate Committee.

Pair Up With an IASLC Patient Advocate Partner

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

Become a Member

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Contact us about the complimentary membership for patients and advocates.

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.
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Research Advocacy Network - Advocate Institute_Logo
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LungFoundationNZ
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Lung Cancer Awareness Month
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Global Lung Cancer Coalition
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Tools for Advocate Involvement

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Journals

Learn about novel research and clinical care advances.
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Featured Meeting

Learn about novel research and clinical care advances.
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Share Your Story of Your Patient Research Advocate Journey

Learn about novel research and clinical care advances.

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

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.