Latest News
A round up of news and views impacting the lives of people affected by ALK-positive lung cancer
Rachel Rowan
We are delighted to announce that Rachel has agreed to join the Board of Trustees. Rachel was diagnosed in August 2025 and her appointment reinforces our ethos of being a paient-led charity,
Rachel has worked mostly in financial services and Insurance, in change and project management. Most of her experience is working on IT projects for the last 20 years.
Conference 26
Our 5th annual patient weekend conference takes place in London on 25-27 September. 215 delegates, our larget number yet, will hear from and question leaing ALK+ experts, including Dr Tom Newsom-Davis, Dr David Gilligan, Prof Richard Bayliss and Dr Shobhit Baijal.
Feedback from 2025
"Thank you for a wonderful conference and a wonderful opportunity to meet other people in the same boat. This was very professionally organised and run and I was very impressed. This was my first attendance".
Questions to Ask Your Healthcare Team
ALK Positive UK has published a new guide to help patients prepare for medical consultations and understand key questions to ask during appointments.
The new booklet, Talking Points: A good practice guide on what questions to ask your healthcare team, has been developed by the Charity with input from clinical experts and reviewers from the ALK‑positive lung cancer community. It has also carries the PIF Tick, the UK’s independent quality mark for trusted health information.
Copies available on request.
Blood Clots
Patients with ALK rearrangements have a 3–5-fold higher risk of blod clots than those with other oncogenic drivers.
Early detection and proactive management is essential and physicians should actively assess for signs and symptoms of thrombosis at diagnosis and throughout the follow up period.
Below is a link to a summary of a study and the full report is available on request.
Professor Alastair Greystoke
We are delighted to announce that Professor Alastair Greystoke is our new Honorary Clinic Advisor,, succeeding Professor Popat who is standing down after 7 years.
Professor Greystoke is Professor of Precision Oncology at Newcastle University and Honorary Medical Oncologist at Newcastle's Northern Centre for Cancer Care.
Professor Greystoke has been very supportive of the charity for many years.
September Conference
We are delighted to announce that Dr Tom Newsom-Davis, thoracic oncologist at Westminster & Chelsea Hospital and chair Brirtish Thoracic Oncology Group, will be our after-dinner Keynote Speaker at the conference.
Our new online booking system for the conference is now live, Click below to read about the conference and to book a place(s).
Emma describes her cancer as being like a suitacse
Emma Britton took part in the launch of Lung Cancer Europe's report on Mental Health and Lung Cancer. Read what Emma had to say about the stress and anxiety of living with lung cancer and her moving description of her Stage 4 lung cancer as like an old suitace.
Patient Information Forum
We are pleased to announce that the charity has again been awarded the PIF Tick Quality Mark as a creator of trusted information.
Jade Fardon
Jade was 29 when she diagnosed with ALK+LC in May 2022 and she and her husband, Russell, are very active supporters of the charity. One of the Charity's priorities is to provide support to newly diagnosed patients and Jade has volunteered to keep in contact with new patients during their first year. Also, Jade has been appointed as our representative at Lung Cancer Europe.
Liquid Biopsies for suspected advanced lung cancer
NHS England has made circulating tumour DNA (ctDNA) testing available for all eligible patients who have a suspected diagnosis of advanced non-small cell lung cancer (NSCLC).
The Christie's ALKnowledge website has a blog about this important step in speeding up the diagnosis and treatment of patients with ALK+ LC and other oncogene-driven LCs.
Neladalkib - Phase 3 Trial
The trial of this 4th generation TKI is now available at several hospitals in England for newly diagnosed patients who will either be prescribed Alectinib or Neladalkib.
Patients who progress on their current TKI may be able to obtain Neladalkib under the Expanded Access Scheme.
EU Parliament
Jade Fardon, Geoff Otterman, Deshani Monik and her daughter representing A:LK Positive UK at an event at the European Parliament in Brussels calling for renewed focus on lung cancer.
Social Media Award Finalist
National recoginition for the ALL YOU NEED IS LUNGS campaign produced jointly by ALK Positive UK, EGFR Positive UK and Ruth Straus Foundation.
The campaign, which featured ALK-positive and EGFR-positive patients telling their own stories openly and honestly, was a finalist in the best charity campaign category.
Pregnancy and Targeted Therapies
Targeted therapies (Tyrosine Kinase Inhibitors – TKIs) may significantly extend lives and It can be expected that more women of childbearing age may contemplate pregnancy. Unplanned pregnancies may occur and women who are already pregnant might be diagnosed with ALK-positive LC.
TKIs might affect the fetus and we are preapring advice about this. Meanwhile, please contact us if you would like to discuss this.
પહેલી પેઢી
All About ALK-positive Lung Cancer
This paper has been produced by Elena Klenova, Emeritus Professor, School of Life Sciences, University of Essex, and an ALK-positive patient.
Although it is a beginner's guide, it is quite technical in parts. However, section 11 (Current and Future Treatment Perspectives) and section 12 (Discussion on Socio-Economic, Health and Research Challenges) are well-worth reading.
Frequency of Head MRIs
3 in 5 ALK-positive patients are likely to develop brain metastases (tumours) within 3 years. The charity considers that 6-monthly MRI scans should be carried out before symptoms occur, so that metastases can be treated when they are small and few in number.
Our Abstract calling for a national protocol has been selected for display at the United Kingdom Lung Cancer Coalition annual conference.
Hardship Fund
1 in 4 of our members living with ALK-positive lung cancer report that they are experiencing significant financial hardship as a result of their diagnosis.
The charity is pleased to announce the launch of the Brenda Cobb Hardship Fund which is financed by Brenda's son, Callum. In fact, within 2 days, we made the first grant. Contact us, if you feel that you could do with some help.
Good News for those diagnosed early
Patients diagnosed at Stages 1-3 would usually have received surgery, if possible, followed by chemotherapy. Trials have shown that a targeted therapy, Alectinib, a tablet taken as an alternative to chemotherapy, produces better outcomes.
This should now be the standard of care.
Lorlatinib Approved
Lorlatinib is a 3rd generation Tyrosine Kinase Inhibitor (TKI) used for the treatment of advanced ALK-positive lung cancer.
On 7 October 2025, it was approved by the National Institute for Health and Care Excellence (NICE) for 1st line use for newly diagnosed people in England and Wales. It had previously been approved in Scotland.