A: So, does this link to the work that the World Endometriosis Research Foundation does?
L: It certainly does. The World Endometriosis Research Foundation, through collaboration with 47 centres in 21 countries, collects clinical data, surgical findings, and biospecimens using the same scientific methods. This data collection is led by the Universities of Oxford and Harvard. The data is all collected in the same way, so
that results can be compared. And, funnily enough, the latest results are actually being presented at the 14th World Congress on Endometriosis this
International Women’s Day.
A: Oh wow! Great segway there. Before you set up WERF, did collaboration not exist?
L: To some extent it did, but not in a meaningful way. I actually project managed the development of the very first guidelines on the management of endometriosis, and that’s how WERF came about. I was presenting a section of that guideline at a conference in Salzburg, saying ‘well we can’t recommend this treatment or that because we have no evidence’, and people came forward to say ‘oh we do that and we have really good results’. But they weren’t publishing their results, and studies weren’t extensive enough, so the collective and consistent evidence was missing. So, later on, and we all know that the best ideas happen at the bar, I was sat in the bar, and WERF was born on the back of a cocktail napkin from discussions colleagues attending that conference. We recognised that we needed to collaborate widely and WERF was founded within a year as a global effort.
A: And this seems more like a vocation for you than a job.
L: Well yes, it’s a vocation that’s become a job if you like. Having had the disease myself, I did some volunteering, and fell into it by accident. There was big congress happening in Copenhagen, and it was a hot summer and I didn’t have much on to be honest, so I went across to learn more! And as someone with a background in sales and marketing, I can’t help myself, and before long I was talking to a journalist about my experience. She interviewed me and I was perhaps a tad blunt so it made for some terrific headlines in a Sunday broadsheet paper. What happened next was a storm of letters that myself and a woman I had met at the congress went through and thought, ‘we have to do something.’, and we cofounded the Danish Endometriosis Society. A couple of years later, when the internet came into its own, I realised the need for factual information available for free to everybody. And I created Endometriosis.org. The rest is history!