EGFR+ UK: 5 Years of Support, Advocacy & Community

In 2019, two women met who shared the same frustration. Jenny Abbott and Kathy Beattie had both been diagnosed with EGFR-positive lung cancer and quickly realised there was nothing in the UK to help people like them. There were groups in the US, but here there was very little support or information. So, they decided to create something themselves.

That decision led to the beginning of EGFR Positive UK. What started as a small Facebook group has grown into a national charity, supporting 1,000 members and becoming a trusted voice for patients, families, clinicians, researchers, policymakers and industry.

the early days

The Facebook group opened on 4th February 2019. Jenny, who had never even used Facebook before, set it up from scratch. Growth was slow at first. By November 2019, they were celebrating reaching 100 members. But it was clear from the start how much this kind of peer support was needed. People newly diagnosed with EGFR-positive lung cancer often feel lost and isolated. Many are younger, often women, often non-smokers. The diagnosis can be completely unexpected and bewildering.

The early group provided a space to share experiences, information, and support. Online events followed, covering everything from treatments and research to nutrition, exercise, skin and hair care. Alongside this, a website was created, a logo designed, and a small team of patients and caregivers formed to start the work towards becoming a charity.

becoming a charity & building partnerships

In May 2020, EGFR Positive UK officially became a registered charity. This allowed the team to expand their work beyond peer support into advocacy, education, and policy. Early relationships were built with organisations like NICE (National Institute for Health and Care Excellence), the Scottish Medicines Consortium (SMC), and pharmaceutical companies developing targeted therapies. The charity quickly became involved in treatment appraisals, ensuring the patient voice was represented when decisions were being made about new drugs.

The first Trustees alongside Jenny and Kathy, included Asgar Rajabali, Mark Bradshaw, Richard Warren, Angela Terry and Jackie Harvey. As the charity grew, new Trustees joined, including Steve MacDonald, Lizzi Brazier and Gini Harrison.

2020 also saw the first in-person members meeting in London, bringing people together face-to-face for the first time.

growing into advocacy

By 2021, EGFR Positive UK had started running national member surveys to capture real-world experiences of people living with EGFR-positive lung cancer. These surveys gave valuable data to support advocacy work and fed into meetings with clinicians, researchers, pharmaceutical companies and regulators.

During the pandemic, virtual support became more important than ever. Monthly Zoom 'coffee and chat' sessions were launched, alongside expert evening webinars with clinicians and holistic specialists. The "Good Practice from the Patient's Perspective" guide was also reviewed and updated.

In partnership with ALK Positive UK and the Ruth Strauss Foundation, the award-winning "See Through The Symptoms" campaign was launched, aimed at raising awareness among primary care professionals of the importance of early diagnosis.

a year of huge challenge

2022 was a pivotal year. It began with devastating personal loss. Kathy passed away in March 2021, followed by Jenny in December 2021. The charity suddenly faced a major leadership gap. Moving from a founder-led organisation to a sustainable structure became the priority. Angela Terry stepped in as Chair, supported by a new team of Trustees, to ensure EGFR Positive UK could continue and grow. Support from ALK Positive UK, NICE, and many clinicians helped guide this transition.

That same year, the charity remained active in NICE and SMC appraisals for new treatments and hosted another successful in-person event in London, bringing members together for education, support, and connection.

building credibility & expanding support

2023 marked another period of growth and increasing credibility. Member surveys continued to provide valuable data, including a presentation at the Lung Cancer Nursing UK (LCNUK) conference. The Facebook support group remained central, now with nearly 500 members by early 2023 and continuing to grow rapidly.

As the charity continued to develop, the Board welcomed additional Trustees, including Debs Littell, Angela Passmore, Natasha Loveridge and Charlie Maxwell.

A Regional Ambassador network was created, allowing local meet-ups around the country and building a stronger sense of community. These social gatherings have become an important part of the charity's support offer.

Two parallel awareness campaigns ran during Lung Cancer Awareness Month: "All You Need Is Lungs" focused on public awareness and challenging stigma, while "See Through The Symptoms" continued to target healthcare professionals.

The charity also introduced one-to-one coaching for members who wanted more in-depth support in managing the ups and downs of living with cancer.

advocacy at national level

In 2024, EGFR Positive UK significantly expanded its advocacy work. Representatives spoke at events in Parliament, including a House of Commons breakfast hosted by AstraZeneca on biomarker testing, and took part in debates in the House of Lords raising urgent issues on drug access. The charity also joined the "Catch Up With Cancer" campaign, pressing for national action on cancer care backlogs.

The annual member survey continued to grow, with the 2024 edition reaching 234 respondents, making it the largest known EGFR-positive NSCLC survey. The findings were again presented at the LCNUK conference and shared with clinicians, policymakers and pharmaceutical partners.

The charity also strengthened its collaborations with academic researchers, producing publishable research that informs both clinical understanding and advocacy efforts.

today & the road ahead

By 2025, EGFR Positive UK has become a respected voice not only for patients but across the wider healthcare community. Membership has grown to over 1,000, and the Facebook support group now provides daily peer support to more than 1,000 people across the UK and beyond. The charity continues to play an active role in NICE and SMC appraisals, research partnerships, pharmaceutical advisory boards, and national campaigns.

Through its thriving online support groups, growing network of regional ambassadors, expert webinars, research surveys, policy work and awareness campaigns, EGFR Positive UK has built something far bigger than anyone imagined in 2019.

At its heart remains the same mission Jenny and Kathy set out with: to ensure that no one has to face EGFR-positive lung cancer feeling isolated or unheard. The community they created has grown into something remarkable, but its purpose is unchanged.

The charity will continue to grow, continue to advocate, and continue to give people living with EGFR-positive lung cancer the support, information and voice they deserve.

To everyone who has been part of this journey so far: thank you. X