Important news from IAPO ( International Alliance of Patients' Organizations)

1st Global Patients Congress delegates say "Trust us – we’re patients!"
“Trust us – we’re patients” was the overwhelming theme of the International Alliance of Patients' Organizations (IAPO) first ever Global Patients Congress, held in London from 25-27 February 2005. Read the Press Release and view the presentations, photos, and working group summaries for Friday, Saturday and Sunday.

Congress Evaluation
Delegate evaluation of the 1st Global Patients Congress has surpassed all our expectations, and provided some excellent ideas to develop the Congress further in 2006. As the Report shows, 96% of respondents rated the overall Congress as "Good" or "Excellent" - a fantastic positive result that echoes many of the comments made during the weekend. More...

Top tips from the Congress
The key challenges, actions and recommendations identified by IAPO’s member organizations at the 1st Global Patients Congress proved to be very insightful, and we have used these to generate some short, concise tips to give to all our existing and future members. View PDF version

IAPO to develop Policy Statement and Guidelines on Patient Involvement in Health
In line with the Congress focus on patient involvement, IAPO is working with members to develop a policy statement and guidelines for patient involvement in health policy, systems and delivery. We welcome comments and we would be grateful to receive them by 15 April 2005. More...

Nominations to the Governing Board
IAPO has issued a call for nominations to its member organizations with the aim of expanding its Governing Board to nine members. This will bring new people into IAPO’s Board with diverse experiences, skills and perspectives to help further our mission to build patient-centred healthcare worldwide. The expanded Governing Board will be announced in July 2005. More...

New IAPO report: What is Patient-Centred Healthcare?
IAPO has released a new publication entitled What is Patient-Centred Healthcare?: A Review of Definitions and Principles. The review paper provides useful reference material on patient-centred healthcare and will assist IAPO, its members and others in identifying and promoting the principles of patient-centred healthcare. More...

WHO launches Global Healthcare Workforce Report
IAPO is delighted to announce that the WHO report, Preparing a Healthcare Workforce for the 21st Century: The Challenge of Chronic Conditions, launched at IAPO's Congress, is now available to download from WHO's website. IAPO has endorsed the report following involvement in reviewing draft versions of the report in 2004. More...

WHO World Alliance for Patient Safety
The Patients for Patient Safety website is now online and contains information on its priorities in 2005. IAPO is a member of the informal steering group set up to initiate the programme. More...

Amsterdam Declaration on Migrant-Friendly Hospitals
IAPO is pleased to announce the availability of the Amsterdam Declaration: Towards Migrant-Friendly Hospitals in an ethno-culturally diverse Europe. IAPO is a long-term supporting partner of this initiative. More...

ICN High Level Consultation, 14-16 March, Geneva
The International Council of Nurses is working on a project to review and address the global nursing shortage. Jo Harkness, IAPO's Policy & External Affairs Director represented IAPO at a high-level multi-stakeholder consultation on the issue held in Geneva from 14-16 March 2005. More...

NEW MEMBERS
22 new members have joined IAPO since the beginning of 2005 - below some of these are profiled, ranging from established global groups to newly formed localised groups working to raise awareness of rare conditions.

International Union Against Cancer (UICC)
UICC is the only international non-governmental organization dedicated exclusively to the global control of cancer. Uniting 280 cancer-fighting organizations in 84 countries, UICC is a resource for action and a voice for change. Read about UICC here. Isabel Mortara, UICC's Executive Director and IAPO Representative said, "UICC is pleased to join IAPO and work together in developing strategies towards patient-centred healthcare".

The Trimethylaminuria Foundation
Trimethylaminuria (TMAU) is a rare metabolic disorder. The Foundation was founded as a support group in 1997 and incorporated includes sufferers from as far as New Zealand and Australia, the Americas and Asia, and Europe. Read about the Foundation here. Mrs Jo Knox, the Director's Representative and IAPO Representative for the Foundation comments, "One of our main goals is to increase awareness of TMAU. It is important to let the world know about this disorder and its devastating effects on sufferers so that anyone suffering silently will know they are not alone. That is why our joining the IAPO is a very important step for us. We will now have access to many IAPO partnerships with a very far reach and we look forward to collaborating on many different levels in the future".

European Liver Patients Association (ELPA)
The newly formed ELPA comprises 16 members from 11 European countries, and will be formally launched on 14 April 2005 during the European Association for the Study of the Liver (EASL) conference in Paris. Read about ELPA here. "ELPA is delighted to become a member of IAPO. As a brand new organization we are very keen to draw on the experience of others who are operating at supra-national level and IAPO is full of exactly that type of experience. It is also extremely useful for us to have IAPO's support in our determination to be an organisation that is both patient-centred and patient-driven, concepts that are often misunderstood," said Charles Gore, ELPA's first President and IAPO Representative.

Headstart
This newly-launched UK-based organization aims to raise awareness of a rare condition called plagiocephaly which is being diagnosed in an increasing number of young babies. Read about Headstart here. Philip Saich, Director of Headstart and their IAPO Representative, said, "We are delighted to be joining IAPO and its thriving network of patient-centred organizations. We feel that we can learn a great deal from this unique community, particularly with regard to raising both public and health industry awareness about little-known conditions such as plagiocephaly."

European Cancer Patient Coalition (ECPC)
ECPC, launched in September 2003, is a European umbrella organization for cancer patient organizations from the 25 Member States. To date it has over 130 national members, representing the common cancers colorectal, lung, breast, prostate and many rarer cancers. Read about ECPC here. ECPC comments, "Joining IAPO is important for ECPC, because of the opportunity it provides to link with patient groups internationally, strengthening the patients' voice at the global level".

International Interstitial Cystitis Patient Network Foundation
The IICPN Foundation is a non-profit organisation providing unbiased information on painful bladder syndrome/interstitial cystitis (IC) and associated disorders for both patients and health professionals around the globe. Read about the IICPN Foundation here. The Foundation's Chairman and IAPO Representative Jane Meijlink said, "Since our foundation is primarily concerned with raising awareness of IC, giving new and existing IC patient support groups around the world a helping hand, we feel that it is an ideal situation to be a member of an umbrella organisation such as IAPO... IAPO can be our global voice. A link with other groups and organisations around the world is an invaluable learning experience. We can all learn from each other and don’t have to re-invent the wheel each time."

UPCOMING EVENTS IN APRIL
World Healthcare Congress - Europe, 7-8 April 2005, Paris, France
IAPO's Chair, Albert van der Zeijden, will speak on "Establishing pricing strategies that balance innovation and access" as part of a session on promoting health care innovation at this high-level event. IAPO has secured a ˆ500 discount on the registration fee for IAPO members. More...

Clean Hospital Summit, 14-15 April 2005, London, United Kingdom
One of our UK-based members, The Patients Association, is organizing a Clean Hospital Summit. The summit aims to help find the answers to keep a hospital a clean and safe environment for patients. Speakers include NHS Chief Executive, Sir Nigel Crisp; Chief Nursing Officer, Christine Beasley; Anna Walker, Chief Executive of the Healthcare Commission; and Lord Warner. A panel discussion will be chaired by Lynn Faulds-Wood with Andrew Lansley MP, Conservative Health Spokesman, and Paul Burstow MP, Liberal Democrat Health Spokesman. More...

How to Establish a European Technology Platform for Innovative Medicines, 21-22 April 2005, Barcelona, Spain
IAPO's Chair, Albert van der Zeijden, will participate in a multi-stakeholder workshop to discuss how a technology platform for innovative medicines could be created and established in Europe. The focus on a technology platform relates to the European Commission's action within the 7th Framework Programme of a 'Technology Platform for Innovative Medicines'.