LUNGevity Launches New Rare Mutations and Fusions Patient Gateway

The specialized resource offers patients with rare mutations or fusions in non-small cell lung cancer (NSCLC) and their caregivers access to treatment information, informative webinars, the latest scientific news, and a supportive community
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Linda Wenger
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WASHINGTON, DC (June 28, 2022) — LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, has launched the Rare Mutations and Fusions Lung Cancer Patient Gateway. This new resource joins a suite of Patient Gateways for lung cancer survivors that present relevant information tailored to their specific subtype. The Rare Mutations and Fusions Patient Gateway will allow survivors with non-small cell lung cancer who have gene mutations or fusions such as ROS1, MET, RET, NTRK, BRAF, and others to locate specialists and resources more easily. The Patient Gateway also features information on treatment options and the ability to connect with a community of fellow survivors and their caregivers.

Targeted therapies exist for nine DNA-based alterations, or biomarkers, in non-small cell lung cancer. Of those nine mutations, ROS1, MET, RET, NTRK, and BRAF are considered rare, with an occurrence rate of 4% or less in patients with NSCLC. “Thanks to research in non-small cell lung cancer, more biomarkers and targeted therapies to treat them have been discovered,” said Amy Moore, PhD, vice president, global engagement and patient partnerships at LUNGevity Foundation. “You often hear about the more common NSCLC biomarkers, such as ALK, EGFR, or KRAS. Our Rare Mutations and Fusions Lung Cancer Patient Gateway caters to patients living with cancer driven by lesser-known mutations. It is important to give these patients and their caregivers a dedicated space to learn about treatment options and access information related to their specific cancer type.”

The Rare Mutations and Fusions Patient Gateway is a user-friendly and easily accessible information portal that offers the latest medical updates and practical resources for patients and their caregivers. The Gateway, available at, provides visitors with information about biomarker testing and the targeted therapies available for each mutation type. Visitors can also find a specialist based on individualized search criteria, join a variety of patient and caregiver communities, explore clinical trial options, and read up-to-the-minute, curated news and trends. Each individual Gateway features expert webinars and blogs, patient and caregiver stories, and quarterly newsletters.

The Rare Mutations and Fusions Patient Gateway joins the EGFR, KRAS, ALK, and non-small cell lung cancer (NSCLC) platforms on A Gateway dedicated to small cell lung cancer is launching later this year.

The Rare Mutations and Fusions Patient Gateway is supported by a generous sponsorship from AstraZeneca, Bayer Healthcare, Blueprint, Janssen, Lilly, Novartis, and Takeda Oncology.

About LUNGevity Foundation

LUNGevity Foundation is the nation's leading lung cancer organization focused on improving outcomes for people with lung cancer through research, education, policy initiatives, and support and engagement for patients, survivors, and caregivers. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum. LUNGevity works tirelessly to advance research into early detection and more effective treatments, provide information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivors—and those who help them live better and longer lives.

Comprehensive resources include a medically vetted and patient-centric website, a toll-free HELPLine for support, the International Lung Cancer Survivorship Conference, and an easy-to-use Clinical Trial Finder, among other tools. All of these programs are to achieve our vision—a world where no one dies of lung cancer. LUNGevity Foundation is proud to be a four-star Charity Navigator organization.

About Lung Cancer in the US

  • About 1 in 17 Americans will be diagnosed with lung cancer in their lifetime.
  • More than 236,000 people in the US will be diagnosed with lung cancer this year.
  • About 60%-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers.
  • Lung cancer takes more lives in the United States than the next two deadliest cancers (colorectal and pancreatic) combined.
  • Only about 23% of all people diagnosed with lung cancer in the United States will survive 5 years or more, BUT if it is caught before it spreads, the chance of 5-year survival improves dramatically.

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