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Healthcare Professionals
Professor Sanjay Popat, Consultant Medical Oncologist, The Royal Marsden Hospital, says "Learn about the charity and how it can support your patients".
We support patients with ALK-positive lung cancer and their families wherever they live in the UK and Ireland.
We also
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Empower patients so that they can have meaningful discussions with their healthcare providers
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Advocate on behalf of patients to ensure that they receive a high level of care wherever they live
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Promote early diagnosis so that more patients can be cured
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Raise awareness of non-smoking lung cancer
Please be aware that we *do not* provide medical advice.
We provide this website as a resource for members to inform themselves about their diagnosis and treatment.
We Support
We provide a forum where patients and their families can exchange information about their diagnosis and treatment, and where they can give and receive mutual support.
We Empower
We are a source of information for patients so that they are better informed about their condition and they are empowered to ensure that their health care providers employ best practice.
We manage a private Facebook forum which is accessible only by patients, their immediate families and close friends. This facility allows our members to exchange experiences and to give and receive mutual support. We recognise that not all patients will use or want to use Facebook and we are able to support them on an individual basis.
We arrange national conference of ALK-positive patients and families where members hear from and ask questions of leading ALK-positive experts. We welcome attendance by lung cancer nurse specialiosts.
'Ask The Experts'
During the Covid pandemic, we recorded a series of online "Ask the Expert" question and answer sessions with the UK's leading ALK+ experts. Click the button below to view them.
We have a team of 14 Regional Ambassadors who arrange local get-togethers for patients and families.
We work collaboratively with other cancer organisations and we attend relevant conferences, in particular, BTOG, LCNUK, CRUK and BOPA
Our Honorary Clinical Advisors are Professor Sanjay Popat, Dr Fiona MacDonald, Jackie Fenemore and Fin McCaul.
As a HCP, would you like us to send you leaflets and other material that might be of interest to your patients and to keep you informed of activities, conferences, meetings, lunches that your patients might like to attend.
We are consulted by NICE, pharmaceutical companies and researchers on the patient perspective of ALK-positive treatments. You can click here for a link to an electronic step-by-step guide on how patients can find clinical trials.
We gather real-world data from our members that we make available to healthcare professionals.
Our Medical and Scientific Advisory Panel advises the Board of Trustees.
We publish advice booklets, reports and articles in medical journals.
Our Chair, Debra Montague, taking part in a panel discussion before 1000 delegates at ESMO 2025 in Berlin.
ALK-positive patients are more likely to develop brain metastases than other lung cancer patients, with 1 in 4 having brain mets at diagnosis. About 1 in 5 will develop brain mets within 2 years. Regular head MRIs are essential, even for patients who do not have brain mets, to identify brain mets when they are small and few in number and can more easily be treated. Unfortunately there is a big variation in the UK in the frquency of head MRI for patients who do not have brain mets. The Charity is calling for a national protocol which recommends 3-monthly head MRI for patients with brain mets and 6-monthly head MRI for patients without brain mets.
We attend local and regional meetings of lung cancer healthcare professionals.
Please contact us if you would like:
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more information about the charity
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us to attend any of your meetings
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leaflets to give your ALK-positive lung cancer patients
We are accredited by the Patient Information Forum as a trusted creator of health informatiom
Partnership working with EGFR Positive UK, Ruth Strauss Foundation & Roy Castle Lung Cancer Foundation
We have developed Support Group Information Cards that LC Nurses and hospital pharmacists can hand to oncogene-driven lung cancer patients. The cards signpost patients to their relevant support group.
Please CONTACT us if you would like a supply of the cards.
We Campaign
We campaign for early diagnosis to improve treatment success and. recovery rates.
We also campaign to raise awareness of lung cancer in never-smokers
Early diagnosis means that more patients can be cured.
Please click here to view the webinar "Lung Cancer in Never-Smokers" by the Primary Care Respiratory Society.
LEARN MORE about lung cancer in never-smokers
Together with EGFR Positive UK and Ruth Strauss Foundation, we campaign to raise awareness that to get lung cancer
All You Need Is Lungs
Discover the 'See Through The Symptoms' campaign
In partnership with EGFR Positive UK and Ruth Strauss Foundation, we recently launched an award-winning early diagnosis campaign, "See Through the Symptoms", targeted at primary healthcare professionals to raise awareness that anyone with lungs, irrespective of age and smoking status, can get lung cancer. Some of our members are in their twenties.
Home / National Conference
National Conference
National Conference 25th - 27th September Every year, the Charity holds a weekend national conference which is free for patients plus one other, except for a small booking fee.
The conference is addressed by the UK's leading lung cancer oncologists. Lung Cancer Nurses are welcome to attend at a subsidised rate.