Help & support
Our primary goal is provide help and support to patients of 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 - such on Facebook or over Zoom, or in person - and our twice yearly forum meetings. We also encourage our members to arrange meet-ups and social gatherings of fellow patients who you connect with through ALK Positive UK.
We hold two one-day forum meetings every year where our guest speakers update us on the latest ALK-positive information and other data. All members are invited and it's a great opportunity to meet other patients and their carers.
Due to the Covid-19 pandemic, we have been unable to host face-to-face events over the past two years. Instead, we have hosted monthly 'coffee mornings' which provide patients and their families and friends with a safe space to talk and discuss any topics that they wish.
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 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.