Welcome to ALK Positive UK
A registered charity established by patients and their families.
Bringing HOPE
We are the UK's leading charity for ALK-positive lung cancer patients
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal rearrangement of the anaplastic lymphoma kinase gene. The vast majority of patients are non-smokers, about half are under 50 years of age when diagnosed (some are much younger), and the majority are female. Most patients are diagnosed at Stage 4. However, modern treatments mean that many patients live active lives for many years.
We Support
We provide a wide range of support services including 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 Advocate
We advocate on behalf of patients to ensure that they receive a high level of care wherever they live in the UK and to promote improved patient outcomes.
We Campaign
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for early diagnosis to improve treatment outcomes
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to raise awareness of lung cancer in non-smokers
Are you a patient or family member?
Detailed and reliable information for patients and family members on how to find the support they need.
Are you a Health Care Professional?
Professor Sanjay Popat, Consultant Medical Oncologist, The Royal Marsden Hospital, says "Learn about the charity and how it can support your patients".
Recently Diagnosed?
View these two short animated videos.
We believe that it is helpful if patients can hear from other patients
Members of our support group have shared their real-life stories which show the ups and downs that they have experienced. The message to be taken from these stories is that there is HOPE. There have been amazing improvements in the treatment of ALK-positive LC since most these patients were diagnosed and it can be expected that there will many more improvements in the years to come.
If you are a patient, family member or friend why not join our support group?
This is a private Facebook support group that consists of over 700 members in the UK. Being a part of our Facebook community will give you the opportunity to receive support from fellow patients who may have shared experiences with you, and answer any questions you may have.
Make Connections
Build relationships with others in the ALK-positive community
Receive Answers
Find practical advice and insights from those facing similar challenges
Exchange Experiences
Share your journey and learn from the experiences of others
"After 18 months of asking, I finally got a brain scan, thanks to the information I learnt on this site. My ONC nurse told me the last time that I spoke to her that she would be led by me as I know more about ALK+ than she does. This is all because of the work that has been done by this Charity."
- Valerie
"We found today’s meeting to be really useful in exploring your already extremely helpful written submission in more depth and helped us unearth issues that were either new or not completely understood such as the real meaning and consequences of certain side-effects. Your insight was particularly helpful as you were able to speak from a personal point of view as well as the wider perspective."
- NICE
"Yesterday I posted an introduction, and I want to thank everyone who wrote to me. I couldn’t hold back my tears — I didn’t expect such support! Your stories give me hope and inspire me. I now see that together we are stronger, and thanks to your support, I have faith in tomorrow."
- Tania
"I want to thank you for everything that you do to provide support to the ALK-positive community. My mother took a huge amount of value and comfort from your online activities where she regularly engaged with others. She found the shared information hugely beneficial and read diligently to ensure that she stayed well-informed."
- NICE
Learn more at our National Conference
Each year we hold a weekend national conference addressed by the UK’s leading ALK-positive experts. The conferences are free to patients plus one family member. Healthcare professionals are welcome.
Be part of our Regional Meetups
Three times each year, we arrange regional lunches throughout the UK and Ireland for patients and a family member. The lunches are heavily subsidised by the Charity.
Discover how you can get
involved and support our work
Whether you need help and support, want to fundraise for our charity, or make a donation, you'll get all the information you need here.