January news update from the International Alliance of Patients' Organizations (IAPO).

IMPORTANT NEWS
One month until the Global Patients Congress
As February approaches, IAPO is looking forward to hosting it's first ever conference: the Global Patients Congress, taking place on 25-27 February 2005 at the Sheraton Heathrow Hotel, London, United Kingdom. This will be the first time that representatives from IAPO's 135+ member organizations have met together, with members attending from Australia, Canada, Nigeria, Portugal, Slovenia, Spain, Uganda, the UK, the Ukraine, Uruguay and the USA, amongst others. An Organizing Committee comprising volunteers from the members have devised a fantastic Programme combining high level panel discussions with intensive member working group sessions, with the assistance of the Programme Facilitator Danièle Letoré, and the IAPO staff. More...

IAPO's historic partnership with global health professional organizations
On 19 January, IAPO announced a historic partnership with the global organizations representing nurses, pharmacists and physicians. The International Council of Nurses (ICN), the International Pharmaceutical Federation (FIP) and the World Medical Association (WMA) have granted official partnership status to IAPO – the global group representing patients of all nationalities across all disease areas. These partnerships provide an important mechanism for health professionals and patients to work together towards quality patient-centred healthcare around the world. More...

IAPO publishes first Briefing Paper for patients' organizations
On 12 January, IAPO issued a Press Release annoucing the publication of its first ever Briefing Paper providing independent information to patients' organizations all over the world. The Briefing Paper focuses on the emerging technology of plant-made pharmaceuticals - protein-based medicines produced in plants that have been genetically modified. IAPO's Chair, Albert van der Zeijden, launches the Briefing Paper on 1 February at the Conference on Plant-Made Pharmaceuticals, Montréal, Canada. The Paper is currently being distributed free of charge to IAPO's members and over 1,000 other patients' organizations worldwide. It will be available to other organizations and companies for a small charge. More...

IAPO's Vice Chair attends the World Economic Forum
Myrl Weinberg, IAPO's Vice Chair, joined leaders of international business, governments and civil society last weekend at the World Economic Forum Annual Meeting in Davos, Switzerland (26-30 January 2005). Myrl participated in two private sessions of the Healthcare Governors Meeting on Thursday 27 January, entitled "Striking the Right Balance in Emerging Countries' Healthcare Systems", and "Can "Enlightened" Consumers Contribute to Rationalizing Health Spending and Improving Quality of Care?". She was invited to contribute to both sessions, providing her view on the role of patients' organizations in disseminating information that would contribute to rationalizing health spending, improving quality of care and achieving better outcomes. More...

MEMBERSHIP NEWS
15 new members from North America
We are delighted to announce that between November 2004 and January 2005, fifteen organizations from North America have joined IAPO as Full or Associate Members, taking IAPO's total membership to 136. Ten of these are national US organizations, including the American Diabetes Association and the National Multiple Sclerosis Foundation (full list below). Two of the groups are national Canadian organizations: the Best Medicines Coaliation and the Canadian Arthritis Patient Alliance. The remaining three groups are global: the International Pemphigus Foundation, Parkinson Pipeliners International, and the International Alliance of Carer Organizations (IACO) joins IAPO as an Associate Member. More...

Canadian Arthritis Patient Alliance joins IAPO
The Canadian Arthritis Patient Alliance (CAPA) is a self-governing entity of and for Canadians with arthritis, all of whom are volunteers. Ann Qualman, President of CAPA and the IAPO representative, says she learned of IAPO through The Patient's Network magazine and was impressed by the quality of the publication. "CAPA has joined IAPO because we share IAPO's commitment to improving health care, patient involvement in health policy and evidence-based practices. We hope to benefit from the experience of IAPO members and to be able to contribute what we have learned." More...

OTHER NEWS
Collecting patient experiences
A UK-based organization is bringing together personal experiences of health in a systematic collection. DIPEx (Database of Individual Patient Experiences) currently collects the health experiences of people in the UK, but it is accessible to people all around the world via the website www.dipex.org. We would like to hear from patients' organizations interested in carrying out similar work in their own countries, languages or communities. There may be a possibility to link with DIPEx to employ their methodology, but resources would need to be found for each project. More...

WHO online discussion on the value of incremental innovation
IAPO member organizations worldwide have the opportunity to contribute their opinion on the value of incremental innovation (or 'me-too' drugs) to a current World Health Organization (WHO) online discussion. More...

EMEA Consultation on biosimilars
IAPO's European members might be interested to respond to a current EMEA (European Medicines Agency) consultation on similar biological medicinal products (biosimilars). More...

European Commission call for public health proposals
Europe-based IAPO members may be interested to know that on 15 January 2005 the European Commission issued a call for proposals entitled 'Public Health 2005', as part of the Programme of Community Action in the field of public health (2003-2005). More...

IAPO article on patient involvement
A short article written by IAPO's Policy & External Affairs Director, Jo Harkness, outlining the benefits of involving patients in healthcare policy is available on IAPO's website. The article entitled, 'Patient Policy: Involving patients in healthcare policy decisions' was published in the Association of British Healthcare Industries' (ABHI) Focus magazine in December 2004. More...