A word from the editors

What is a Paediatric Cancer Unit (PCU)? What should it provide? Which are the facilities? These questions presented themselves at the last General Assembly in Århus. We try to answer these questions by giving you the recommendations for the organisation of a PCU, as adopted by the International Society of Paediatric Oncology, SIOP.
You will also find in this newsletter the so called Leiden Charter, adopted by the European Assocation for Children in Hospital (EACH).

How can we assess the essential needs and priorities in countries with limited resources and what can be ICCCPO's answer? In cooperation with the SIOP and the European School for Oncology (ESO), ICCCPO is involved in the International School for Pediatric Hematology-Oncology for countries with limited resources at Monza (M.I.S.P.H.O). Pia Bonini reports on this joint initiative. At the same time when many of us met in Århus at the General Assembly, the German Leukemia Research Foundation invited parents and representatives of parent organizations from Russia for a meeting in Germany. 

We briefly report of the General Assembly in Århus where we welcomed new representatives from Letland, Marocco and Switzerland, and we print ICCCPO's Annual Report 1995-1996. 

The ICCCPO invites you all to the parents meeting at the SIOP Conference in Vienna (Austria) in Oktober. The Conference of the SLAOP, the Latin American Society for Paediatric Oncology, in November this year will probably include a parents meeting. For dates and details see the Announcements.

This international newsletter can only exist if you provide us with information. Please, do not hesitate and don't be deterred by the language. You could write about paediatric oncology in your country, about the work of your parents group, about the specific needs and problems. You could tell us how you collaborate with other groups within your country or abroad, or you could review a book, send us information or a report of meetings and other activities etc. Please send us your letter and contributions (if possible on diskette or by E-mail, WP 5.1) before the deadline of the next newsletter which will be October 15, 1996. 

Last but not least we would like to ask your help in spreading this newsletter and in making other organizations aware of ICCCPO. 

We are looking forward to meeting you at the SIOP meeting in Vienna, Austria, in October this year.

Gerlind Bode
Marianne Naafs-Wilstra 

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Annual Report 1995-1996

The International Confederation of Childhood Cancer Parent Organizations started its second year of operation at the Second General Assembly at Washington D.C., U.S.A. in July 1995. This meeting was attended by more then 30 parents and representatives of childhood cancer parent organizations. The General Assembly ratified the status as a Member Nation of Iceland and adopted a Resolution on Twinning Programs on the 10th of July 1995. The General Assembly appointed Jesús Maria Gonzalez Marín, ICCCPO's former Chairman, as the first Honorary Member of the International Confederation of Childhood Cancer Parent Organizations.

Presentations were made on the topics of Genetics, Less Pain More Love, Effective Communication between Parents and Medical Professionals, Pain Management, and Starting and Maintaining Support Groups. One of the speakers was the SIOP Chairman, Mark E. Nesbitt Jr., MD. 

Currently ICCCPO has twelve Member Nations, consisting of Canada, Denmark, Finland, Germany, Iceland, Italy, Morocco, The Netherlands, Portugal, Spain, Sweden and The United States of America. The status as a Member Nation of Greece, Letland, Norway, South Africa, Switzerland and Yugoslavia had been approved by the Executive Committee and is pending ratification by the General Assembly.

ICCCPO issued three newsletters which were distributed to 210 organizations worldwide. These were copied by several organizations in order to spread the information in their own country. Spanish and Italian translations of the newsletter were available thanks to the voluntary work of Hortensia Diaz Asper and Pia Bonini. The editorial staff of the ICCCPO Newsletter consisted of Gerlind Bode and Marianne Naafs-Wilstra. 

A brief information leaflet on the activities of ICCCPO has been produced by Gerlind Bode, Mark Chesler, Kurt Hansen and Christine Wandzura. Through the joint efforts of Kurt Hansen and the secretariat, the design of a logo and stationery has now been completed.

Christine Wandzura, through Candlelighters Canada, has been assigned the task of establishing a catalogue of all the resources by parent initiatives. This bibliography is intended to support parents in their search for information. A further object is to identify booklets and articles suitable for translation. 

A one day session was held during the 1995 International Society of Pediatric Oncology (SIOP) meeting in Montevideo, Uruguay. This meeting was attended by approximately 100 parents and representatives of childhood cancer parent organizations as well as pediatric oncologists, psychologists and social workers, many of them from Latin American countries. The success of this meeting has led to ICCCPO being invited to plan a session for parents at the 1996 SLAOP (Latin American Society of Pediatric Oncology) meeting to be held in Lima, Peru. 

The Executive Committee has put strong efforts in networking with parents and parent organizations as well as professionals from different countries. Several private meetings were organized to establish contacts. This initiative has met with considerable interest, judging by the large number of requests for newsletters and further information. 
Collaboration with other international organizations such as SIOP, SLAOP, the international Nurses Committee, The European School for Oncology (ESO) and the World Health Organization (WHO), increased.

The Executive Committee held two meetings during the year. The first meeting was in Washington in conjunction with the ICCCPO General Assembly, the second in Montevideo, Uruguay. ICCCPO was received favourably by the SIOP and has decided to co-arrange an annual SIOP/ICCCPO meeting to expand liaisons with health care professionals. The great interest taken by SIOP in ICCCPO was evident by the publishing of an article on ICCCPO in its newsletter.

Financially ICCCPO is sound with a balance of US$ 14.394. The support of the Swedish Childhood Cancer Foundation serving as a Secretariat and the contributions of several of the organizations of Executive Committee Members to the cost of Executive Committee meetings has also allowed to limit the amount expenses incurred by ICCCPO.

The work of ICCCPO, still a very young new organization, has made good progress in the second year. ICCCPO's structure works well and ideas are plentiful. Entering the third year of the organization, ICCCPO is looking forward to another year of growth in membership and influence. 

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 "M.I.S.P.H.O" : Monza's International School for Pediatric Hematology-Oncology for countries with limited resources.

ICCCPO involved in an important outcome from the Montevideo Conference

On the occasion of the SIOP meeting in Montevideo, October 1995, we had the opportunity to meet many parents, volunteers and professionals from Latin America and to receive first hand information on the situation of pediatric hematology-oncology in their countries.
The Congress was also the occasion to attend interesting sessions and to foster our links with SIOP. ICCCPO seems to become a well recognized organization in the SIOP community, in the light of common aims and commitments.
In conclusion of his plenary lecture "Design for a cooperation programme", Prof. G. Masera (Italy) proposed the MONTEVIDEO STATEMENT in which the scientific community addresses governments, international bodies and anyone who shares the same vision, asking for their commitment in order to allow children with cancer who live in low income countries to receive adequate therapy.
As a first positive result of the Montevideo experience, we are glad to announce the establishment of MISPHO, the Monza's International School for Pediatric Hematology-Oncology for countries with limited resources.
The initiative has been made possible by the contribution of the Italian Saving bank CARIPLO and the Fondazione Tettamanti. It will be carried out with the cooperation of SIOP, ESO (European School of Oncology) and ICCCPO.

Aims of the school:
To provide an opportunity for professionals of countries with limited resources in homogeneous geographical and socio-economic areas to:
- update technical knowledge;
- improve methodological know-how specifically with respect to the critical assessment of current standard approaches;
- promote a coordinated and global approach with an appraisal of the essential needs and priorities;
- favour the creation of collaborative networks capable not only of delivering better care, but also of documenting and evaluating it epidemiologically;
- promote the development of situation of care with a high degree of integration between the medical, psychological, organizational aspects;
- promote "twinning" programs between Northern and Southern oncology centers.

Program:
In order to achieve its aims, MISPHO will promote the following activities:
- Intensive residential training courses on specific topics of pediatric hematology-oncology.
- Publication of manuals and guidelines on essentials. 
- Fellowships for training period on Basic and Clinical Research in pediatric hematology-oncology to be spent in Monza.
- Continuing training programs through medical literature updating, using modern technology.

The first course will take place in September 1996 in Milano-Monza and will be attended by pediatric hemato-oncologists of countries from Central and South America. The program shall focus on the critical evaluation of essential aspects for diagnosis and treatment of childhood leukemia.

Director of the School:      G. Masera (Italy)
Members of the Scientific Board:

For information please contact:
   MISPHO
   Pediatric Department, University of Milan
   San Gerardo Hospital - Via Donizetti 106
   20052 Monza - Italy
   tel. + 39 39 2333513, fax: +39 39 2301646
   E-mail: Masera@IMICILEA.CILEA.IT
Pia Bonini-Serrafero, Monza

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ICCCPO News

New members

At the last General Assembly in May in Århus ICCCPO welcomed six new Member Nations: South Africa, Norway, Switzerland, Letland, Greece and Yugoslavia. We invite all parent organizations to join us. The Secretariat in Sweden can provide you with all the information and an application form. 
The annual membership fee is $500 for a Nation. In case there are more groups in your country, you can split this amount. However, this may never be a barrier to join the international confederation. So, if your organization wants to join but does not have the financial means, please notify this in your application. We make a strong plea to your solidarity: if you are able to pay more, please do so and thus help others. 

Secretariat and Executive Committee

Barncancerfonden in Sweden has offered to run ICCCPO's secretariat for another period of two years, which the General Assembly gratefully accepted. 
Barbro Erikson, Pia Bonini, Gerlind Bode and Christine Wandzura were reelected as members of the Executive Committee.

The ICCCPO Bibliography

The ICCCPO, with the help of Candlelighters Canada, will prepare and distribute a catalogue of all the resources by parent initiatives. Please forward your published resources to Candlelighters Childhood Cancer Foundation Canada, 55 Eglinton Avenue East, Suite # 401, Toronto, Ontario M4P 1G8, Canada. 
Kindly accompany this resource with an annotation in the original language and in English! 

Newsletter in translation

Spanish and Italian versions of former ICCCPO Newsletters are available at the Secretariat in Sweden. We are looking forward to receiving any translations into other languages! 

Internet

The use of E-mail facilities makes international communication not only quicker, but particularly less expensive. So, please send us your E-mail address, if you have one. We will add it to our directory.  The E-mail addresses of the board members can be found under the heading Executive Committee. 

Brochure

The new ICCCPO brochure has been sent to you together with this newsletter. You can order more copies at the Secretariat.
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