ALK-positive lung cancer is a specific type of non-small cell lung cancer (NSCLC) characterised by an abnormal rearrangement of the anaplastic lymphoma kinase (ALK) gene. This rearrangement, most commonly a fusion with the EML4 gene, leads to uncontrolled cell growth and cancer development. It’s a relatively rare form of lung cancer, often found in individuals who have never smoked or are light smokers, and who are typically younger than the average lung cancer patient.
ALK Positive (USA based with groups worldwide)
From their website:
ALK Positive, Inc. is a patient-founded and patient-driven nonprofit organisation committed to transforming the future for everyone affected by ALK-positive cancer. What began in 2015 as a grassroots effort by Merita Carroll—a stage IV patient and oncology nurse seeking connection—has grown into a global movement of more than 3,000 patients and care partners across 55+ countries.
We’re not just here to raise awareness—we’re here to drive research, fund clinical trials, and demand better treatment options.
From advocating for the inclusion of ALK in clinical studies to investing in breakthrough science, we act with urgency—because for our community, research means survival.
Our focus is clear:
- Supporting high-impact research with the potential to extend and improve lives
- Educating and empowering patients and care partners to navigate their diagnosis with confidence
- Building partnerships with those who share our vision for a world in which ALK-positive cancer is not only treatable—but curable
This is more than an organisation. It’s a global force for change, made possible by dedicated volunteers, bold leadership, and a community that refuses to wait.
Many international groups offer support via social media, such as closed Facebook groups (see ALK+ Canada, below).
ALK Positive Europe
ALK Positive Europe (APEU), which is based in Germany, is a non-profit organisation connecting ALK-positive patient associations, advocacy groups and ALK+ ambassadors across Europe.
It is a patient-centred voice and advocacy group that raises awareness of ALK-positive lung cancer, advocates for better treatments and supports research to change the future of ALK-positive lung cancer.
According to its website, ALK Positive Europe is ”a non-profit organization connecting patient communities, associations, and advocacy groups across Europe.
”Our goal is to improve the quality of life for ALK-positive patients and turn a terminal illness into a chronic and hopefully curable disease. We work to expand access to cutting-edge healthcare, clinical trials, drugs, and therapies for European patients.”
We are the largest ALK-positive patient community in Europe, with 13 members representing 1700 patients and caregivers.
We are a patient-driven voice and advocacy group driving awareness, advocacy and research supporting improved therapeutics aiming to change the future of ALK-positive cancer.”
ALK Positive Europe members include ALK-positive patient organisations and ambassadors from Norway, Finland, Sweden, Denmark, Germany, the Netherlands, Belgium, the United Kingdom, Switzerland, France, Italy, Spain and Greece.
Not All Lung Cancers Are The Same Campaign
ALK Positive Europe has partnered with Takeda to launch their Not All Lung Cancers Are The Same campaign.
This co-created campaign aims to drive awareness of the different subtypes of oncogenic-driven lung cancer and biomarker testing. Launched for Lung Cancer Awareness Month (November 2025) the campaign is designed to have an impact extending far beyond.
Core materials are housed on ALK Positive Europe’s website, and linked below:
- 🔗 Your guide to lung cancer biomarker testing and finding the care that fits you
- 🔗 Your conversation guide to lung cancer biomarker testing and treatment
Keep an eye out for our content and feel free to engage or share further across your channels!
ALK Positive UK
ALK Positive UK was established by patients, their families and friends in 2018. The charity provides information and support to members and holds an annual weekend conference for patients and their families to hear from and question the UK’s leading ALK-positive experts.
From their website:
Our purpose is to extend the overall survival and quality of life of ALK-positive lung cancer patients across the UK.
To achieve our vision, we
- Support patients and their families
- Empower patients so that they can have meaningful conversations with their healthcare providers
- Advocate for best care throughout the UK
- Campaign for early diagnosis
- Raise awareness of lung cancer in non-smokers
Has links with Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
ALK+ Canada
Facebook closed group
Research ALKay +ve
Research ALKay +ve is a charity raising funds for research into ALK Positive Lung Cancer in the UK.
From their website:
“Lung cancer is shockingly under funded relative to most other cancers. There is a misconception that lung cancer is caused by smoking, so somehow sufferers deserve it, making it an unpopular cancer to donate to. Let us state right now that NO ONE DESERVES LUNG CANCER even if the wrong choices were made.”
“Because lung cancer research is so under funded, and ALK only affects 5% of lung cancer cases, research into ALK needs relies heavily on public fundraising if we are to achieve the same groundbreaking advances and success rates as other cancer treatments.”
“So, at Research ALKay+ve our aim is a simple one – to raise much needed funds which will be used specifically for research into alk positive lung cancer. The distribution of the money raised will be carefully considered by our trustees to ensure that it is targeted at research that is more likely to succeed, or make a greater impact, within a reasonable time frame.”
The charity has links with several other UK lung cancer charities and support organisations, including our members, Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
https://www.alkpositiveresearch.co.uk/
ALK+ International
ALK+ International is an ALK+ patient and family-led organisation which aims to improve the life expectancy for ALK+ cancer patients. Although it is based in the UK it offers information and support worldwide.
It provides small grants for ALK+ cancer-related projects and trials.
From their website:
“Our aim is simple: To improve the life expectancy for ALK+ cancer patients.”
“We will do this by:
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Fundraising, we can help drive more of the most vital research for ALK+ patients by providing grants for projects and clinical trials.
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Advocating for improvements to treatment and clinical trial availability, with government, pharmaceutical companies, regulatory bodies and other organisations.
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Working with relevant charities, medical professionals, government and regulatory bodies, we will effect change among decision makers using our knowledge and experience of ALK+ cancers.
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Keeping abreast of trials, breakthroughs and technologies internationally in the oncology industry, we will better advocate for patients and help accelerate the introduction of lifesaving ALK+ advances.”
https://www.alkinternational.org/
ALK Positive.org (USA based, global reach)
Patient-driven organisation, dedicated to Improving the life expectancy and quality of life for people with ALK-Positive lung cancer worldwide. The group focuses on sharing research and info that will help people with ALK-Positive lung cancer to be informed throughout their treatment journey
Benefits to members include:
- Access to a free Second Opinion medical program.
- Access to the ‘’world’s top ALK doctors’’.
- Information about ‘’cutting-edge research’’ and trials and more.
ALK+ ROS1 France Cancer Poumon Association
From their website:
“The ALK+ROS1 France Cancer Poumon association was founded in 2021 by two ALK+ lung cancer patient advocates with over 3 years of combined patient-focused advocacy experience in the lung cancer community.
“It is a group of caregivers and patients affected by lung cancer with rearrangement (ALK+, ROS1, NRG1, RET, MET, etc.), rare pathologies representing 1 to 5% of non-small cell lung cancers (NSCLC).”
Our goals are:
- Raising awareness of these rare and little-known forms of lung cancer
- Support patients in their care pathway and inform them about the disease (diagnosis, management, treatments, side effects, clinical trials, supportive care, etc.)
- Interact with healthcare professionals specializing in the field to stay informed about the best available and upcoming therapeutic options
- Encourage research into the development of new treatments, synonymous with hope and quality of life
- Represent patients with gene mutations in professional and decision-making bodies and ensure that everyone has access to the latest therapeutic advances regardless of their geographical location within the country
- Raise funds to achieve our goals, finance communication tools and activities for the benefit of patients.”
https://alkros1france.com/association/
ALK Fusion (Private Facebook group, international)
Facebook group for people with ALK+ lung cancer. Private, but welcomes new members.
https://www.facebook.com/groups/ALKFusion/
