Our purposes are
to support patients with ALK-positive lung cancer wherever they live in the UK
to empower patients so that they can have meaningful conversations with their healthcare professionals
to advocate on behalf of patients to ensure that they receive a high level of care wherever they live
to promote early diagnosis so that patients can be cured
We do not provide medical advice.
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 provide this website as a resource for members to inform themselves about their diagnosis and treatment.
We arrange national meetings of ALK-positive patients and families where members hear from and ask questions of leading ALK-positive experts.
110 patients and their families attended our free weekend conference in September 2022 where they heard from and questioned the UK's leading ALK-positive experts.
The 2023 conference was held in London in September and 140 patients and family members attended. Once again, the UK's leading ALK-positive experts were in attendance. The conference was free for UK ALK+ patients plus one.
We arrange 'Ask the Expert' online sessions with leading ALK-positive consultants - view these here.
We offer our members a Life Coaching course and One to One support
We hold weekly online exercise sessions and monthly online coffee mornings.
We have a team of 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
We are consulted by NICE, pharmaceutical companies and researchers on the patient perspective of ALK-positive treatments.
Click HERE for a link to an electronic step-by-step guide on how patients can find clinical trials.
We have joined with EGFR+ and Ros-1ders to form the Oncogene-Driven Lung Cancer Patient Alliance UK and will share best practice, optimise resources and carry out joint collaborations.
We gather real-world data from our members that we make available to healthcare professionals.
Our Medical and Scientific Panel advises the Board of Trustees.
Our 14 Regional Ambassadors arrange local subsidised meet-ups of members and their families.
We publish advice booklets, reports and articles in medical journals.
Patients gain real benefit from belonging to a support group
We attend local and regional meetings of lung cancer healthcare professionals.
Please contact us if you would like
more information about the charity
us to attend any of your meetings
leaflets to give to your ALK-positive lung cancer patients.
We campaign for
raised standards of care