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European Patient Association Network

European Patient Association Network. Presented by Dr Judith Wardle Director, Continence Foundation UK. History. March 2004 meeting of patient groups arranged by Pfizer to: Inform about current trends in diagnosis & treatment of OAB

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European Patient Association Network

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  1. European Patient Association Network Presented by Dr Judith Wardle Director, Continence Foundation UK

  2. History • March 2004 meeting of patient groups arranged by Pfizer to: • Inform about current trends in diagnosis & treatment of OAB • Discuss current issues & barriers to patient/health professional communication • Share information about what we were all doing ICS CPC 2005

  3. Learning from other conditions • Presentation by Matilde Leonardi of Italian Federation of Neurological Associations • Recognition of increasing patient awareness of information needs • Increase in patient-focused research • More patients wanting to be proactive in relation to their condition, including influencing research • Federation formed including professional input ICS CPC 2005

  4. Meeting 2 August 2004 • Moved on to focus on possible joint activity: • Learning from the work of 2 major continence organisations • Workshop discussions on which activity/activities we wanted to start with ICS CPC 2005

  5. Presentation by Nancy Muller of National Association for Continence (USA) • all the different activities they have gradually taken on in over 20 years, noted: • the detailed planning required • importance of input from industry • professional/public co-operation in awareness raising activities ICS CPC 2005

  6. Presentation by Judith Wardle of Continence Foundation UK • How legislative change is achieved: • Campaigning must be part of wider activity raising awareness & providing information • It takes a very long time, and has to build up using mechanisms in the political process to get a brief mention of continence (in UK parliamentary questions & Early Day Motions) • Wait for a simple idea to focus on • It costs a lot of money & people’s time ICS CPC 2005

  7. Options we came up with • Conduct research/surveys on barriers to seeking help/treatment • European Awareness Event • Define a common communication strategy/compile key fact sheets • Develop a plan to influence legislation • (Choice of option made by e-mail discussion) ICS CPC 2005

  8. August 2005 • Discussion planned about European Awareness Event but supported by a communication strategy and sheets giving key facts about continence • Discussion document prepared in advance by a steering committee of Diane Newman, Peter Junneman, Linda Crumlin & Judith Wardle assisted by staff from Pfizer: via e-mail and telephone conferencing ICS CPC 2005

  9. What we decided on Monday • Helpful presentation by Depression & Bipolar Support Alliance – always good to hear experience of other disease areas • Agreement in principle about a Continence event – countries might use different subtitles • Approach other organisations for co-operation e.g. EAU • Need to clarify where any funds would be held and to source manpower for organising ICS CPC 2005

  10. Continued • Experience of UK shows how long a lead up is needed to an awareness week – start November for next September. • So for 2006 a website listing events around Europe during the year (ICS help?) • Plan for event in 2007, possibly tie in with or announce at ICS in Rotterdam ICS CPC 2005

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