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IPM Network
Jane Meijlink

Jane Meijlink

Jane Meijlink, born and bred in the United Kingdom but resident for many years in the Netherlands, is the founder and chair of the voluntary, non-profit International Painful Bladder Foundation (IPBF) for people with Interstitial Cystitis, Bladder Pain Syndrome, Hypersensitive Bladder, Hunner Lesion, Chronic Pelvic Pain and Associated Disorders. Has been a voluntary advocate and representative in this field since 1993 when she co-founded the IC patient movement in the Netherlands following her own diagnosis of IC/BPS after over 30 years of non-diagnosis.

Now retired from her professional life, she worked for 40 years as a translator, editor and writer and has made maximum use of these skills in her voluntary work for the patients.

Gives presentations worldwide on behalf of patients at international meetings and congresses. Has written information for patients and professionals worldwide, including a number of book chapters for medical books. In recent years, she has authored and co-authored several publications in scientific journals. She has a special interest in standardisation of terminology and definitions and their impact on the patient. Through her membership of the International Continence Society (ICS), she was the first patient to be invited to join the ICS Standardisation Steering Committee. Jane Meijlink is a firm believer in the need for patient representatives to participate in standardisation, guidelines and taxonomy in order to ensure that a comprehensive picture of the disorder is obtained, together with a full appreciation of the impact on the patient in practical terms following implementation.

In 2003 she was decorated Member of the Order of Orange Nassau in the Netherlands for voluntary work to the community in the field of IC and in 2007 was presented with the Portuguese Association of Urology Medal of Honour for her voluntary work for IC patients.