Networking and Endometriosis By Victor Cattermole, Asia Pacific Bureau Chief Victor's Bio     Email article    RSS feed      Share on  facebook

It’s been a couple of years since I had caught up with Lone Hummelshoj in a London High Street café. As the two of us fly around the world we just seem to miss each other but finally this week in Hong Kong a chance to catch up.

Lone Hummelshøj publishes the largest online global resource in endometriosis (www.endometriosis.org). The website provides evidence based facts on endometriosis and serves as a platform for the exchange of news and information amongst clinicians, scientists, and women with the disease across the world.

Lone has a background in sales and marketing having spent 13 years with IBM working with some of its largest clients within the financial services industry in Europe. She has worked as a freelance business development consultant since 1996, specialising in strategic marketing, project management and facilitation.

Lone co-founded the Danish Endometriosis Society in 1997, chaired it for seven years, and was instrumental in the implementation in 2002 of the first ever (and only) national legislation, which provides referral guidelines to specialist centres for the treatment of endometriosis.

In October 2004, Lone instigated, organised, raised funds for, and facilitated the founding meeting of the European Endometriosis Alliance where 19 representatives from 12 organisations in 11 countries were represented and agreed on a mutual agenda to move endometriosis-awareness forward in Europe. The Alliance has staged parallel events in Europe during endometriosis awareness week (2nd week in March) since 2005.

In June 2005 she succeeded in getting the highest number of signatures ever from MEPs on a human health issue with the 2005 Written Declaration of Endometriosis. Endometriosis was heard in the European Parliament in September 2005 as part of a report on gender discrimination in health systems as a direct result of this achievement. In January 2006 Lone made history in getting women’s health (with a specific reference to endometriosis) on the 2006 Work Plan of the European Commission. Subsequently, in May 2007 a pan-European coalition of patient organisations and universities was granted €296 000 by the European Commission to strengthen the work on endometriosis in Europe.

Lone took over the post as Secretary General for the World Endometriosis Society at the beginning of 2006, and in October that year she was appointed Chief Executive of the World Endometriosis Research Foundation (a joint initiative between the ASRM, ESHRE and the World Endometriosis Society).

Lone has published extensively on endometriosis, and is co-author of the “Guideline for the diagnosis and management of endometriosis” published in Human Reproduction in 2005, and she continues to project manage its annual update. She has presented on the impact of endometriosis, and the need for patient centred care, at international congresses in Europe, North and South America, Africa, and Austral-Asia, and is regularly utilised as a session organiser, chair, and facilitator.

Lone is on the endometriosis faculty of F1000 for Medicine, an active member of the Special Interest Groups on endometriosis within both ESHRE and the ASRM, and Associate Editor for Patients’ Perspectives in Women’s Health for Gynecologic and Obstetric Investigation.

It might seem odd writing about Lone in a publication that’s about networking. Consider this though, it’s estimated that between 10% and 15% of all women suffer from Endometriosis. Most of them don’t know as it has never been diagnosed. The current diagnosed network of Endometriosis sufferers is around 90 million women world wide.

Lone is a relationship expert when it comes to Endometriosis. Women who suffer related because they have a common interest, Lone is an expert because she is a solution provider to that network.

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