Welcome to the July news update from the International Alliance of Patients' Organizations.

IAPO's Reception in Geneva a great success
We are pleased to give a positive report back from our series of meetings and Reception at the John Knox Center in Geneva on Monday 12 July. The evening Reception was well attended by over fifty high level representatives of key global health associations, as well as representatives of two of IAPO's members, the International Osteoporosis Foundation and the World Headache Alliance. All at IAPO are very grateful to Heather Richmond and Merck & Co., Inc, one of our Industry Partners, for enabling Ilona Kickbusch, Professor of Global Health at Yale University and Senior Advisor to the Pan American Health Organization (PAHO) to attend to give a Keynote Address entitled "Health and Citizenship: the Characteristics of the 21st Century Health".

Feedback has been excellent, with much interest in IAPO and its members, and our vision of patient-centred healthcare. To read our Press Release written in preparation for the Reception, please click here. The Reception Programme, with full list of attendees, is available as a PDF file here.

Historic meeting of global patient and professional associations
During our time in Geneva, IAPO organized an historic meeting with the International Council of Nurses (ICN), World Medical Association (WMA) and the International Pharmaceutical Federation (FIP). During the meeting, a strong commitment was made by all parties to develop a close working relationship which will strengthen our work towards patient-centred healthcare. In addition, this working relationship with ICN, WMA and FIP has been formalised with IAPO being granted 'official relations' with ICN and FIP, and with WMA from October of this year. IAPO will be working with these three associations over the coming months to identify collaborative projects, alongside day-to-day support and exchange.

Board Meeting
Our visit to Geneva also incorporated a meeting of IAPO's Governing Board, held in the peaceful meeting rooms of the John Knox Center. The Agenda included a focus on ways to increase membership of IAPO, utilising our new Policy Framework, and also included a Congress Planning Meeting with the Programme Facilitator, Daniéle Letorè. Please click here to see photographs of the Board at the Center.

Welcome to the Multiple Sclerosis International Federation (MSIF)
IAPO is delighted to announce that MSIF has just become a Full Member of IAPO, joining our six other international members. MSIF was established in 1967 as an international body linking the activities of national MS societies around the world. Its mission is "to work in world-wide partnership with Member Societies and the international research community to eliminate multiple sclerosis and its consequences, and to speak out globally on behalf of those affected by multiple sclerosis".

One of MSIF's priorities is to provide support for the development and increased effectiveness of new and existing national MS societies. To this end, in September 2003 they published a booklet entitled "How to Develop a National MS Society" which identifies five phased stages to the development of an effective national MS society. The booklet is also available online as a PDF file here, along with two other "How to" guides ("How to Influence Public Policy" and "How to Develop a Mutual Support Group"). Other IAPO members may find these guides useful as an example of how we can each work to strengthen the patients movement around the world.

Paul Rompani, MSIF's IAPO Representative and International Development Manager, said "We are very excited about the benefits and opportunities that membership of IAPO can bring to MSIF and ultimately to people affected by MS worldwide. It is clear that sharing best practice within a global network of patients' organizations will not only strengthen our organizations and the projects and programmes we develop to support our members, but will also bring the concept of patient-centred healthcare to a wider audience. We are very much looking forward to meeting representatives of other international organizations at the IAPO Congress in 2005 and to working with them and IAPO in developing effective global advocacy initiatives."

Announcement of the Global Patients Congress Organizing Committee
The Committee is about to start working to develop our Congress Programme in conjunction with our Programme Facilitator, Danièle Letoré, and our Advisors. We are pleased that the Committee represents IAPO members from all over the world, from both large and small organizations. They will be working to ensure the Congress sessions are effective in strengthening the excellent work our members already do.

Organizing Committee members:

• Carlos Celaya, Executive Secretary, Spanish Coalition of Citizens with Chronic Illness
• Sandra Dill, Executive Director, ACCESS Australia Infertility Network
• Robert Johnstone, Chairman, Arthritis & Rheumatism International
• Virginia Ladd, IAPO Board Member; President and Executive Director of the American Autoimmune Related Diseases Association
• Trudie Lobban, Chief Executive, Syncope Trust and Reflex Anoxic Seizures (UK)
• Louisa Mavromatis, Patients Rights Movement (Cyprus)
• Stephen McMahon, President, Irish Patients Association
• Rod Mitchell, IAPO Treasurer; Chair of the European Federation of Crohn's and Ulcerative Colitis Associations
• Josef Mrázek, Vice President, Czech Association of Patients
• Paul Rompani, International Development Manager, Multiple Sclerosis International Federation
• Lynne St.Clair-Chapman, Arthritis New Zealand
• Enrique Silver, IAPO Secretary; President of the Uruguayan Cystic Fibrosis Association
• Paul Sochaczewski, Head of Communications, International Osteoporosis Foundation
• Albert van der Zeijden, IAPO Chair; Vice President of the Council for the Disabled and Chronically Ill in The Netherlands
• Myrl Weinberg, IAPO Vice Chair; President and CEO of the National Health Council (USA)

In addition, we are lucky to have the expertise of four Advisors to assist in programme development:

• Julie Cooper, Director, Public Health Unit, Interel Public Relations & Public Affairs
• Donna O'Leary, Director of Organizational Affairs and Meetings, National Health Council (USA)
• Jo Welch, Chief Executive, Morgan Allen Moore
• Mary Worstell, Health Advocacy Consultant

We will be keeping you informed about the Congress in each monthly newsletter.

Shaping the EU Health Community 7-9 September 2004
We are proud to announce that IAPO is a member of the Program Advisory Committee for the above conference, represented by our Chair, Albert van der Zeijden. Details of the Program have now been announced and can be viewed on www.euhealthcommunity.org. Plenary sessions include a keynote address by Peter Sloterdijk, Professor of Philosophy, Hochschule fur Gestaltung, Karlsruhe, Germany on "Shaping Communities: History and Present". There are also parallel sessions on Consumer and Patient Issues, Long Term Care and Health Care In The Local Community.

IAPO member hosts parliamentary debate in the UK
One of IAPO's UK members, The Patients Association, recently held a seminar at the House of Commons in London to debate how to improve patient access to specialists in the UK. The seminar on 5 June 2004 brought together MPs, Peers and patients' associations. It was chaired by Dr Ian Gibson MP, Chairman of the Science & Technology Committee, who congratulated The Patients Association for once again bringing attendees together for an important and informative discussion. For more details about the event please click here.