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संपर्क

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.

               

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We work collaboratively with other cancer organisations and we attend relevant conferences, in particular,
BTOG, LCNUK, CRUK and BOPA

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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. 

A Guide for Doctors, Patients and Families.

Report by our members taking TKIs

Need for national guidelines

Detailed Illustrated Guide

.

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

early diagnosis

raised standards of care

national guidelines

We have partnered with EGFR Positive UK and Royal Castle Lung Cancer Foundation to develop Support Group Information Cards that LC Nurses and hospital pharmacists can distribute 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 these cards

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.  

Early diagnosis can mean that patients are cured.

Please click HERE  to view the webinar "Lung Cancer in Never-Smokers" by the Primary Care Respiratory Society

Please click HERE  to read  about lung cancer in never smokers

Please click HERE  to read the report of the "See Through the Symptoms" campaign

Our campaign is being rolled out by NHS Cancer Alliances and the new Integrated Care Systems.

Please click below for more information about the campaign.

Anyone with lungs can get lung cancer.

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