The year 1999-2000 has been another exciting year for ICCCPO and for parent organisations throughout the world. After the rapid growth of the confederation in 1999 when the General Assembly accepted nine organisations as full members and two as associate members, this year the Executive Committee will recommend to the Annual General Assembly 2000 the ratification of 8 organisations as full members and 3 organisations as associate members, representing Mexico, Cuba, Australia, Tasmania, Bangladesh, Luxembourg, Russia and Ireland.
The ICCCPO poster, designed and yearly updated by Sadie Cutland, shows the extent of ICCCPO on the map of the world and also gives information about our goals and activities. 

The feelings and emotions of parents of children with cancer may be universal, but the problems faced by parents in different parts of the world show vast differences: from the total lack of drugs on one end to the psychosocial needs of survivors on the other. As a consequence we see a broad variety of groups and their programmes. Some are led by parent, some by professionals, some focus on information and self-help, some on raising money to buy drugs or to build a paediatric oncology unit. 

ICCCPO tries to provide programmes and services to all these different kind of organisations. We expanded our information services and launched a website, both important media for education and sharing. At our yearly meetings we not only provide lectures but also workshops - at this Conference in Amsterdam on Standards of care, Cultural differences and Long term survivors - three topics that show the wide range of goals of parent groups.

At the start of the year the Executive Committee identified several areas that needed special attention: 1) communication systems with member organisations and organisations that have expressed an interest in joining ICCCPO, 2) financial support of organisations with limited resources to enable them to join the confederation and attend ICCCPO meetings, 3) financing ICCCPO's operations and programmes, 4) collaboration with SIOP and the Continental SIOPs, 5) more focus on the problems in countries with limited resources. 
We have worked hard in these areas, and not unsuccessfully.

Communication with (future) members
The suggestions made by the General Assembly in Montreal on improving communications with current and potential member organisations have been incorporated into our policies and plans. The Membership Committee chaired by Mark Chesler enlarged ICCCPO's outreach to parent organisations and initiatives throughout the world. There is a structural follow-up on delegates who attended various meetings or asked the Secretariat for information. 
Internet and e-mail turned out to be a very efficient way to communicate with our members and other organisations, and its value will even increase in the future. Apart from the e-mail system phone and fax were frequently used and via the traditional mail system we distributed invitations, newsletters, the book You are not alone, etc. There has been a lot of correspondence back- and for-ward with many organisations, not only on practical matters like membership or conferences. We do receive more and more newsletters and reports of our members and hear about their different programmes and activities. Part of this information has been or will be published in the Newsletter.

Financial support
Reduced fees payments (upon request and approval by the General Assembly) is one way to help organisations to join ICCCPO. Some wealthier organisations support others by paying their annual dues. Another way is to grant stipends to parent organisations to attend our meetings or to arrange for free accommodation. For this ICCCPO meeting we had the tremendous help of the Netherlands Parent Organisation (VOKK) that raised a lot of money and arranged for beds at private families, but also the Austrian, German and Italian group supported people to attend. For the African parent meeting in Sun City, South Africa, CHOC did a wonderful job in this respect. 

Our policy is the continuation of financial support but we realise that the available amount of scholarship money is highly dependent on the fundraising efforts of the host organisations and therefore may differ each year. 

Financing ICCCPO's activities
ICCCPO's first financial source are membership fees, but to realise all our plans and programmes we have to find other ways of funding. We made a request to get an international charitable registration and are awaiting response. Our former Executive Committee member Johan Sandal made the first contacts with Cap Gemini Norway. This company offered to build our Website for free and will host it for two years. We hope that this wonderful offer by Cap Gemini will be an example for other companies. Attempts to find sponsors for other programmes and services are yet unsuccessful but will be continued by the fundraising committee chaired by Simon Lala.

Co-operation with SIOP
There is an increasing co-operative relationship with SIOP and the continental SIOPs like SIOP Africa, SLAOP (Latin America) and SIOP Asia. As a result of ICCCPO's presence at the Annual SIOP Conference over the last nine years physicians and other professionals have become aware of ICCCPO, its mission and its programmes. At SIOP 1992 in Hannover parents were strangers in a world of physicians, nowadays parent meetings are a fixed part of all SIOP conferences and ICCCPO is either a member of the local organising committee or works with them to prepare the conference. While professionals seek our help to organise parent meetings at their conferences they themselves are helpful to us in our efforts to get in contact with parents and parent initiatives in countries on the different continents. 

At this SIOP Conference in Amsterdam the exchange between professionals and parents is even more prominent than last year. Together we organised five joint meetings and symposia (last year there was only one joint session). ICCCPO and SIOP representatives attended and made presentations at each others conferences and the ICCCPO abstracts were published in the MPO (the official SIOP abstract book). 

Executive Members met with SIOP leadership, PODC, Nurses Committee and Psychosocial Committee and we anticipate continuation of this co-operation.
Although good working relationships with professional organisations like SIOP are of great importance and value for our work, we must admit that the agenda's of parents and professionals are not necessarily always the same. Therefore we try to retain our own identity and programme focus. 

Next year SIOP will meet in Brisbane, Australia, a place that is not particularly accessible
for our members. Therefore we will organise our next yearly meeting at a more central place to be chosen by this General Assembly.

Focus on developing countries
It is a fact that only 20% of children with cancer in the world have access to optimum care. Limited treatment facilities, scarcity and the high price of medicines hamper continuous treatment of children in economically poor parts of the world. Slowly we become aware of the problems faced by parents living under these circumstances. ICCCPO wants to empower these parents, stimulate them to join forces and help them to set up parent organisations, thus becoming advocates for their children. ICCCPO officers have been actively involved in continental conferences in Africa and Latin America and made or renewed contacts with existing and starting parent initiatives. With either financial or practical support we enabled 28 delegates to attend this Conference and General Assembly. At this conference in Amsterdam we discussed in a joint session with the PODC Committee the possibilities and challenges of parent groups in developing countries. In the workshops we learned about Standards of care and Cultural differences and during the symposium on Palliative care we heard about the need of good palliation when there is no curative treatment available at all. Communication through Internet has increased our contacts with groups in these countries at a minimum of costs. 
We know this is only a start; we would like to be able more often to visit starting groups and help them on their way. We are however still facing the problem of having insufficient financial resources to do all the things we would like to do.

Information
We expanded our information services - important media for education and sharing.
§ A new and major project was the development of the ICCCPO Website. It was launched in February. Our first formal site was created by Cap Gemini in Norway and will continue to be generously hosted by them for the first two years. A website is a continuosly evolving project and so we will be continously upgrading and adding to it in the future. Another
way of keeping our members in contact and informed as well as telling the world our story.
Some members already have hyperlinks to this site, and we encourage others to do the same. We offer member organisations one page on our website to present their organisation. A format for this will be developed next year. Christine Wandzura is in charge of this project. You find the site at www.icccpo.org
§ The ICCCPO Newsletter is not only a source of information about childhood cancer and parent organisations but also the house organ of the confederation. Over the years the newsletter - that is also published in Spanish - has proven an excellent means for sharing information and generating interest in our organisation and its plans and programmes. However, editing, printing and mailing of the newsletter is - even though it is a very simple version - relatively costly. And there remains the question whether it does reach our target group. It may end on the desk of a group leader who may not find the time to translate it and/or distribute copies to board members, other group leaders and individual parents. Because we doubt the cost-effectiveness we discussed different formats of the ICCCPO Newsletter and Gerlind Bode, who chairs the editorial staff, will present at this AGA a possible new way of distribution via Internet.
§ With the help of many member organisations we published a Bibliography of their editions and resources. Many publications of our members are not copyrighted so that information booklets can easily be translated and adapted. This annotated resource list is a never-ending project that needs to be updated every year and for that we are counting on the ongoing assistance of our member organisations. The bibliography is now available as booklet but in the near future we will put in on our web page so that you can download it.
§ All members received in March a free copy of the book You are nor alone. This publication by Mark Chesler and Candlelighters USA is a valuable source book that helps newly established parent groups to organise and maintain a group as well as individual families to start their support group. All new member organisations will receive this book as a welcome when they join the ICCCPO. 
§ We collected all hand-outs of past workshop, containing practical information. These are available at the secretariat and will be put on the ICCCPO website.
§ The SIOP psychosocial committee with the assistance of members of the ICCCPO Executive Committee and individual ICCCPO members has designed several psychosocial guidelines for the assistance of families of children with cancer. Over the years we have published all these documents in our Newsletter. A complete set of the guidelines is now available at the ICCCPO Secretariat and during this conference at the ICCCPO/VOKK exhibition booth. In the near future you can download the psychosocial guidelines from our website.

Meetings
This ICCCPO Conference and General Assembly Meeting, attended by 125 representatives of parent organisations from 43 nations and many professionals is further evidence of the growth of ICCCPO. The lectures have been of high quality, and very informative, and the workshop sessions as well as the informal meetings have been excellent opportunities for parents from many nations to share ideas and programmes, problems and opportunities, with one another. Although the venue, with its location and cost, undoubtedly reduced the numbers of parents who were able to attend, having the meeting so that medical and nursing staff could be present does have many benefits.
We thank the Netherlands organisation for their help in preparing and hosting this meeting.

At the parent meeting organised by CHOC, the Johannesburg Group, ICCCPO was represented by Simon Lala, Mokhtar El Harras and Sadie Cutland - also member of the local organising committee. This conference was held at Sun City on Saturday 13th and Sunday 14th May 2000 along with SIOP Africa. The conference was very successful, and everyone who attended came away enriched by the experience. Apart from the content of the presentations, many delegates mentioned the value of the interaction with parents from other parts of South Africa, and from other countries. The contacts with the doctors, nurses, and other professionals were also greatly appreciated. The development of a common vision between all of the people involved in treating childhood cancer patients should have benefits well into the future of paediatric oncology in Africa. 

At the conference, representatives of the parents from Johannesburg, Cape Town, Pretoria, and Kwa Zulu Natal, agreed to form a national South African organisation to bring all of the parent groups (which currently exist, and which people want to form) under one umbrella. 

Sadie and Julian Cutland were prominently mentioned for their role in CHOC-SIOP Africa in the SIOP Newsletter.

The ICCCPO was involved in the SLAOP Conference in Havana, Cuba (the Latin American SIOP). Former ICCCPO president and honorary member Jesús Maria Gonzalez Marin (Spain) attended the parent meeting where he met with a number of parent groups from Middle and South America.

Simon Lala tried to organise a parent meeting on the occasion of SIOP Asia in Singapore, but failed due to lack of response. We hope to be more succesful at SIOP Asia 2002 that will take place in India. Preparations for this conference have already started. 

Internal operations
In February 2000 the Executive Committee met for two days in Barcelona, Spain, where we were generously hosted by the national Spanish federation and the local group of Barcelona. We also met for two days in advance of this ICCCPO Conference and AGA meeting in Amsterdam. In between Executive Committee meetings we were able to work efficiently and make decisions thanks to the effective communication system between EC-members and ICCCPO Secretariat via e-mail. 

We have developed and improved systems and procedures for financial accounting, internal and external communication, stipend applications, membership applications, reduced fees applications, etc. These procedures are now part of an Operation Manual that will help future Executive Committee members and the Secretariat to run the confederation.
The help of the Secretariat, hosted by Candlelighters Canada, has been very valuable. Partly they offered their time as a donation in kind.

Also we could bank on the help and experience of a number of volunteers outside the Executive Committee who worked in several committees: two former board members Pia Bonini and Johan Sandal, and Julian Cutland and Geoff Thaxter. Extra hands are needed and we certainly will make an appeal on others more often.

The home organisations of the members of the Executive Committee again made a tremendous contribution by supporting the EC membership. Thanks to their solidarity we made minimal drain on ICCCPO's budget so that we were able to expand our programmes and services for our members. We would like to acknowledge their indispensable contribution and support to the international cause.

Executive Committee
Marianne Naafs-Wilstra, chair (The Netherlands)
Mark Chesler, vice-chair (USA)
Christine Wandzura, secretary (Canada)
Simon Lala, treasurer (New Zealand)
Sadie Cutland (South Africa)
Gerlind Bode (Germany)
Rogelio Aráujo (Spain)
David Orren (Israel)
Mokhtar el Harras (Morocco)

Amsterdam, The Netherlands, October 7th 2000