Biomarker testing, which is testing to identify changes in the cells that are “driving” the cancer to grow and spread, is vital to understanding treatment options for people diagnosed with non-small cell lung cancer. The results of biomarker testing can show if targeted therapies or immunotherapies should be included in treatment options.
The worldwide lung cancer advocacy community now consists of numerous groups with differing aims, objectives, and agendas. The GLCC has created this resource of groups dedicated to specific biomarkers to help meet the specialised interests of people whose cancer has specific, targetable biomarkers.
We aim to maintain a complete list, so if you are aware of a group we’ve missed, please contact us via: glcc@roycastle.org
Biomarker Patient Groups
ALK Positive UK (UK based)
ALK Positive UK was established by patients, their families and friends in 2018. The charity aims to extend the overall survival and quality of life of ALK-positive lung cancer patients across the UK.
It provides information and support to members and holds an annual weekend conference for patients and their families to hear from and question the UK’s leading ALK-positive experts.
Has links with Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
https://www.alkpositive.org.uk/
Research ALKay +ve (UK based)
Research ALKay +ve is a charity raising funds for research into ALK Positive Lung Cancer in the UK.
It was set up by Philip and Aileen Murgatroyd following the diagnosis of their daughter Kay with ALK+ lung cancer in 2016. She was just 17, and planning to train for a career in nursing. Kay responded well to treatment and eventually qualified as a nurse. Sadly, however, she died in 2023.
The charity has links with several other UK lung cancer charities and support organisations, including our members, Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
https://www.alkpositiveresearch.co.uk/
ALK+ International (UK based, global reach)
ALK+ International is an ALK+ patient and family-led organisation which aims to improve the life expectancy for ALK+ cancer patients. It provides small grants for ALK+ cancer-related projects and trials.
Has links with Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
https://www.alkinternational.org/
EGFR+ UK (UK based)
EGFR Positive UK is a registered charity established by patients and their families and friends in 2019. It aims to improve the overall survival and quality of life of EGFR-positive lung cancer patients across the United Kingdom.
The charity provides information and support for EGFR-mutated lung cancer patients and their families through its patient-led support group. It also supports research to change EGFR positive lung cancer into a chronic disease that can be managed long-term and raises awareness of the disease.
Has links with Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
https://www.egfrpositive.org.uk/
Ruth Strauss Foundation (UK based)
The Ruth Strauss Foundation was set up in memory of Ruth Strauss, wife of former England cricket captain, Andrew Strauss. The charity supports families facing the death of a parent to cancer and funds research into lung cancer not related to smoking.
Has links with Roy Castle Lung Cancer Foundation, Asthma + Lung UK, and Lung Cancer Nursing UK.
https://ruthstraussfoundation.com/
Oncogene Cancer Research (UK based, international reach)
This charity has the mission is to increase the life expectancy of people living with oncogene-driven cancers that originate in the lungs, with a view to one day finding a cure. https://www.oncogeneresearch.org/biomarker-groups
Oncogene-Driven Lung Cancer Patient Alliance UK (UK based)
The Alliance comprises UK patient-focused support groups for lung cancer patients with an actionable mutation. Members of the alliance are:
The purposes of the Alliance are to:
- share best practice
- optimise resources
- carry out joint collaborations
- support the formation of patient support groups for all actionable mutations
ALK Positive.org (USA based, global reach)
Patient-driven organisation, dedicated to Improving the life expectancy and quality of life for people with ALK-Positive lung cancer worldwide. The group focuses on sharing research and info that will help people with ALK-Positive lung cancer to be informed throughout their treatment journey
Benefits to members include:
- Access to a free Second Opinion medical program.
- Access to the ‘’world’s top ALK doctors’’.
- Information about ‘’cutting-edge research’’ and trials and more.
BRAF Bombers (US based, international reach)
A patient driven organisation for BRAF positive patients, survivors and their loved ones.
Mission: BRAF in lung cancer is one of the rarer mutations. There are powers in numbers and there is power in information so the concept here is to share and help one another with treatments and side effects and support one another in whatever ways needed.
The aim is to bring together research, information and hope for all with a BRAF biomarker. It strives to inspire comfort, hope, and community to fight in common battle. BRAF Bombers aims to provide knowledge of education and resources, including clinical trials, for cutting edge therapies.
Offers links to several lung cancer organisations including three of our US members, CancerCare, Go2 Foundation for Lung Cancer, and Lung Cancer Research Foundation.
BRAF Bombers site: https://www.brafbombers.org/
Also has a members-only Facebook group, but anyone with BRAF+ lung cancer is welcome to join. https://www.facebook.com/groups/1077213015965166/
EGFR Resisters (USA based, global reach)
A patient- driven community dedicated to improving outcomes for people with EGFR positive lung cancer. The goal of the EGFR Resisters is to improve outcomes for people with EGFR+ lung cancer by accelerating research. Their vision is to change EGFR+ lung cancer into a manageable chronic disease. A key part of their mission is to continue to raise awareness of EGFR+ lung cancer and to address critical and clinical research gaps.
Caregivers are also welcome. The group shares treatment experiences, information about clinical trials, breaking news about research developments, and other information.
Offers links to other organisations, including Go2 Foundation for Lung Cancer, Lung Cancer Research Foundation and IASLC.
ALK Fusion (Private Facebook group, international)
Facebook group for people with ALK+ lung cancer. Private, but welcomes new members.
https://www.facebook.com/groups/ALKFusion/
KRAS Kickers (USA based, global reach)
Non-profit information and support group for people with all types of cancer driven by the KRAS oncogene.
Mission statement: KRAS Knowledge + Research + Advocacy = Survivorship.
Founded by patients for patients and those who care, stronger together as a non-profit for any KRAS oncogene or cancer type. Aims to connect people to current research, resources and a community to Kick Cancer’s KRAS!
https://www.kraskickers.org/mission
Exon20 Group (USA based, global reach)
A special initiative of ICAN, International Cancer Advocacy Network
Mission statement: Improving Survival and Quality of Life, One Patient at a Time
The Exon 20 Group is a laser-focused, multi-stakeholder, global coalition of patients, care partners, family members, thoracic/medical oncologists, scientists, molecular profiling labs, and pharmaceutical companies and biotechs with the mission of converting exon 20 insertion mutations into chronic diseases and then curing them.
Membership in the Exon 20 Group is FREE, but they carry out “onboarding” of each patient first before they can join the community.
MET Crusaders (USA based)
A community of lung cancer patients, care givers, advocates, researchers, and physicians dedicated to helping patients with the MET alteration live normal lives.
Mission to:
- Create and maintain an active community of patients and caregivers sharing their experiences and providing mutual support
- Help patients harbouring a MET alteration navigate their healthcare options
- Advocate for new screening, testing and treatment options
- Collaborate with like-minded associations in the crusade against cancer.
Offers links to Go2 Foundation for Lung Cancer and LUNGevity
RET Renegades (USA based, international reach)
A project of LUNGevity, “RET Renegades” shares resources for lung cancer patients impacted by the RET mutation. Information, resources and advocacy can be found at their private Facebook group, open to people with RET+ lung cancer.
https://www.facebook.com/groups/RETlung
RET Positive (US based, international reach)
RETpositive is a patient-driven nonprofit that aims to improve the quality of life and life expectancy of RET-positive cancer patients by raising awareness, providing patient and caregiver support, and funding medical research for RET-driven cancers.
RET-positive cancer is caused by a mutation or abnormal re-arrangement of the RET gene. It occurs most commonly in lung cancer and several types of inherited and sporadic thyroid cancers. RET alterations also occur in an estimated 1-2% of multiple other cancers, including ovarian, pancreatic, salivary, breast, and colorectal cancers.
Offers information, community, and hope via private Facebook support groups: RETpositive, open to patients and caregivers dealing with any RET-driven cancer, regardless of tissue of origin, and LUNGevity RET Renegades.
Website: https://www.retpositive.org/
NTRKers (US based, global reach)
The NTRKers is a global, non-profit patient group, founded by patients and loved ones living with NTRK gene fusion cancer, and supported by leading clinical experts.
Changes to the NTRK gene can cause normal cells to transform into cancer cells no matter where they are in the body. As a result, our community includes people with different tumour types – thyroid, lung, sarcomas, salivary gland and CNS tumours, to name a few. Although NTRK gene fusion cancer is rare, both adults and children are affected.
The group’s goal is for every adult and child with NTRK gene fusion cancer to have the best chance of living life to the fullest – and that means better access to testing, treatment, and research.
The ROS1ders (US based, global reach)
The ROS1ders is a global group of patients and caregivers living with ROS1+ cancer. It seeks to improve outcomes for all ROS1+ cancers through community, education, and research.
It was founded in 2015 by a small group of ROS1+ lung cancer patients. It is now the largest collection of ROS1+ patients and caregivers in the world, with hundreds of members from dozens of countries. Initially, the group partnered with other nonprofits to drive research into ROS1+ cancers of all types. In 2019, it incorporated and became The ROS1ders, Inc., a 501(c)(3) nonprofit corporation run by volunteers, most of whom are patients or caregivers living with ROS1+ cancer.
Information, Support groups, closed Facebook groups etc
Several GLCC member organisations offer information about biomarker-driven lung cancers or care pathways associated them, such as targeted therapies (or personalised medicines) and immunotherapies. They may also provide community support, or links to such groups.
Some of our members also provide links to private or closed Facebook groups.
Here are some examples:
Longkanker Nederland Closed Facebook groups (Netherlands)
The general Facebook page of Longkanker Nederland is a good place to meet fellow sufferers. This public page is accessible to everyone and you can go here for news and experience stories about lung cancer and about the organization Longkanker Nederland.
In addition, there are 12 closed groups that people can join. These groups are not public and messages can only be read and posted by members of the group. Please note: some of these closed groups are not specifically related to oncogene-driven lung cancers, but all offer support to people affected by lung cancer.
- Lung Cancer Patients Netherlands (for everyone with lung cancer) – only for patients
- Young people with lung cancer (up to approximately 55 years of age) – for patients only
- Family or survivors of someone with lung cancer – only for family
- EGFR mutation in lung cancer – for patients only
- ALK/ROS1/MET or RET translocation in lung cancer – for patients and families
- Immunotherapy for people with lung cancer – for patients only
- Small Cell Lung Cancer (SCLC) – For Patients and Families
- Super young and yet lung cancer – only for patients
- Lung cancer could happen to you – for patients and families
- BRAF mutation in lung cancer – for patients and families
- KRAS mutation in lung cancer – for patients only
- HER 2 mutation in lung cancer – for patients only
Group administrators
Longkanker Nederland facilitates all groups. The NFK office is the administrator. In addition, each group has patients as co-administrators. They welcome you and also give advice as experienced experts. There are also two relatives administrators.
Lungekraeft Patientforeningen (Denmark)
Not a biomarker / oncogene group – our member organisation in Denmark.
On their website, the Who can help? section offers support.
Getting lung cancer is experienced by most as being put in a state of emergency. The questions are many and both of a practical and emotional nature. Fortunately, there are many who can help you answer your questions. Get the overview here.
Do you need to talk to someone who understands you?
Then contact the Lung Cancer Patient Association or the Norwegian Cancer Society:
- The Lung Cancer Patient Association, call 4016 2335
- The cancer line at the Norwegian Cancer Society, call 8030 1030 (open 9-21 on weekdays and 12-17 Saturday)
- Your local cancer advice at the Cancer Society
Lung Foundation Australia
LFA offers several information resources focused on biomarker-driven lung cancers, particularly in their Genetic Testing section – https://lungfoundation.com.au/resources/genetic-testing-in-lung-cancer/
The Foundation also provides links to counselling services and lung cancer support nurses.
Cancer Aid (Australia)
Not an oncogene / biomarker lung cancer group, but a service that provides aid and support for people in Australia who have cancer.
CancerAid is a free cancer management app for people living with cancer and their carers. In the app, you can monitor treatments, find reliable resources, manage side effects and read other people’s experiences.
Oncoguia (Brazil)
As with other GLCC organisations, the Oncoguia website offers information about genetic testing of lung cancer and the various treatment options. It also provides resources for people diagnosed with lung cancer wanting to learn more about the condition and support services available.
https://www.oncoguia.org.br/cancer/cancer-de-pulmao/
Alcase (Italy)
Alcase offers information resources, with discussions of biomarkers and how they can drive lung cancer tumours. Also offers links to patient forums and support groups.
Esperantra (Peru)
Similarly, the Esperantra site offers links to information resources and patient support networks.
https://www.esperantra.org/programas-de-apoyo-2/
CancerCare (USA with international reach)
CancerCare of the USA is also among those member organisations to offer information resources regarding biomarker-driven lung cancers.
https://www.cancercare.org/publications/94-lung_cancer_new_tools_for_making_decisions_about_treatment
Useful links and articles:
IASLC (International Association for the Study of Lung Cancer – US-based with global reach)
Numerous information resources for people with biomarker-driven lung cancer, including:
The Knowledge Bank (Sweden)
Acces via Lungcancer Foreningen www.lungcancerforeningen.se/om-lungcancer/
and Regional Cancer Centre website: https://cancercentrum.se/samverkan/
Not a patient support or advocacy group, but a useful overview of diagnosis and treatment of lung cancer, with clear information about targeted therapies and immunotherapy options for people with appropriate biomarkers.
https://kunskapsbanken.cancercentrum.se/diagnoser/lungcancer/vardprogram/lakemedelsbehandling/
Young Lung Cancer Patient and Caregiver Group (Private Facebook group, open to people with lung cancer diagnosed under 50)
Not biomarker-specific but useful resource.
Young Lung Cancer Patient & Caregiver Group (Diagnosed at 50 or younger)
Articles and resources
https://media.cancercare.org/publications/original/386-2018_Lung_Cancer_Roundtable.pdf
(Authors include Carolyn ‘Bo’ Aldigé, work supported by Winfield Boerckel)
Lung Health Foundation (Canada): Targeted Lung Cancer Therapies – Precision Medicine Whitepaper.
New Treatment Options for Patients With Oncogene-Addicted Non–Small Cell Lung Cancer Focusing on EGFR-Mutant Tumours
Authors: Stephanie P.L. Saw, MBBS, MRCP, Xiuning Le, MD, PhD, Lizza E.L. Hendriks, MD, PhD, and Jordi Remon, MD, PhD
https://orcid.org/0000-0002-9462-875
Publication: American Society of Clinical Oncology Educational Book
https://doi.org/10.1200/EDBK_432516
