As we approach the one-year anniversary of the #TALKEndo ENDO1000 campaign launch in Edinburgh, funded by Dr Marie Macklin CBE, Marie reflects on the progress made so far and emphasises that “there is still more to do.”

In April 2024, through her ‘Special Projects’ initiative, Marie – herself a historical endometriosis sufferer, funded a strategic report and national awareness campaign to support the pioneering research being led by Professor Andrew Horne and the ENDO1000 project team at the University of Edinburgh’s Centre for Reproductive Health. Her aim: to shine a national spotlight on the condition and to assist women who have, or have yet to receive, an endometriosis diagnosis.

ENDO1000 is a UK-wide research project collecting data and biological samples from 1,000 individuals with confirmed or suspected endometriosis. This pioneering work will lay the foundation for personalised care and treatment, with the potential to transform countless lives by significantly improving both diagnosis and treatment.

The ENDO1000 team’s mission is to significantly reduce the lengthy diagnostic delays faced by many women, to develop personalised treatment approaches informed by real-world patient data, and to accelerate discovery through long-term, data-driven research that can shape the future of endometriosis care.

The launch event (October 2024) brought together ambassadors, project partners, donors, and invited guests, who heard directly from leading experts before touring the ENDO1000 laboratories and research hub. As Lead Ambassador, Marie issued a powerful call to action – a £1 million fundraising target to help drive the project forward.

The event gained significant national media coverage, including features on Channel 5 News, BBC Radio Scotland Drivetime, and STV, amplifying the campaign’s reach and impact. Since launch, the ENDO1000 team, ambassadors, partners and donors have worked tirelessly to raise funds – now reaching almost £500,000, halfway to the target.

This fundraising effort is not just symbolic; it is essential to the progress of the ENDO1000 project. Every pound raised helps strengthen the team’s capacity to commence the next phase of the research. Endometriosis affects an estimated 190 million women worldwide and 1.5 million in the UK, costing the UK economy around £8.2 billion each year in treatment, lost work, and healthcare costs.

Marie continues to engage with the Scottish Government regarding ENDO1000 and #TALKEndo, advocating for increased awareness and resources to support this vital work.

“We’ve made incredible strides in just one year – but this is only the beginning. We owe it to the millions of women affected to keep pushing forward, to fund the research, and to build a future where diagnosis and treatment are faster, fairer, and more effective,” said Dr Marie Macklin CBE.

She added: “The fundraising effort to date has been fantastic. However, there is still a way to go to ensure that the project can properly fulfil its hugely ambitious goals and potential. “This is a Scottish-based research project of potentially far-reaching significance, and as such it deserves as much support as possible.”

You can find out more about ENDO1000 via their website at www.endo1000.com