Help & Support
Our primary goal is provide help and support to patients with ALK-positive lung cancer and their families. It is completely normal to feel a wide variety of emotions after your diagnosis. You may feel angry, shocked, upset or worried. It's important to give yourself time to accept and understand your diagnosis and how this will affect your life. ALK-positive lung cancer is a relatively rare form of lung cancer, so you may have lots of questions. You can ask your medical team and support team any questions, at any time.
As a charity, we provide a wide variety of help and support. This is available online, through our Facebook Forum, Zoom, or in person. We also encourage our members to arrange local meet-ups and social gatherings of fellow patients who you connect with through ALK Positive UK.
We do not provide medical advice but our members collectively have a wealth of experience that they are happy to share.
We provide patients with the information that they need to have meaningful discussions with their healthcare providers about their treatment
You can contact the charity for advice by email, website or telephone.
If you ask a question on our Facebook Support Group, you can be assured that you will receive useful answers.
We hold regional lunch-time meet-ups throughout the country where you can meet and exchange experiences with fellow patients.
We hold a national free weekend conference each year where you can hear and question ALK+ experts.
We offer free Life Coach courses to help patients and their close families to cope with their diagnosis.
We hold monthly online coffee mornings where the conversation might be about ALK+ , holidays or anything else.
We hold weekly online exercises classes with the emphasis on strengthening bones and muscle and you work to your own level.
We have a website where you will find a wealth of information about all aspects of ALK+ lung cancer.
We can provide advice on obtaining a second opinion.
We can assist you if you wish to complain about your treatment on the NHS.
We have a DVLA Panel that can provide advice in the event of you losing your driving licence as a result of brain metatases.
This booklet has been produced by ALK Positive UK to provide as much information as possible to newly diagnosed patients and their families.
It includes information on treatments, side effects, next steps, your medical team and what ALK+ lung cancer is, as well as other information and a glossary.
The purpose of this document is to empower patients to be involved in and better informed about their treatment.
It suggests key questions that patients might like to ask their oncologists.
The document has been endorsed by leading ALK-positive oncologists.
This flow chart document demonstrates the pathway and associated concerns and questions for many patients.
As a charity, one of our main objectives is to support patients at every stage of their ALK-positive lung cancer charity journey.
We have two private Facebook groups for patients and their families. The first group is where patients and their carers share news - both good and bad - and where we all support each other on the ups and downs of this disease.
The second is for friends of ALK Positive UK, where we share important updates and general information about ALK-positive lung cancer and our work.
These are private groups and not open to the general public.