A Word from the Editors

Back from our most recent meeting in Istanbul, where we met with so many of you, we are full with new energy to pursue the goals of our international group. We had many talks and enlightening discussions, we learned from each other in workshops and group settings. We saw many new faces and met representatives of (member) organizations from Europe, North and South America, Africa and Asia. Our chairman, Mark Chesler, addressed the attendants of the 29th SIOP Meeting at the Opening Ceremony - a very new experience.

Thank you all for your attendance and your contributions - and to those of you who could not attend, here are a few articles from the sessions. 
In this newsletter you will also find the SIOP guidelines for the care of long-term survivors and the characteristics of national-level parent groups as collected by Mark Chesler.

Under the heading "ICCCPO News" you can read more about the progress of the ICCCPO resource centre/bibliography which is close to completion, and under "Announcements" you can see when ICCCPO organizes its next meetings. We are looking forward to welcome you at any of the 1998 conferences organized by or in collaboration with the ICCCPO. Please note that members of parent groups from less privileged countries can apply for a travel scholarship to any of the ICCCPO meetings. For more information contact Barbro Eriksson (see list of Executive Committee). 

And as always, we encourage you to send us your own contributions, your information, everything you want to share with the other groups.
Thank you!

Marianne Naafs-Wilstra
Gerlind Bode

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ICCCPO News

Membership
ICCCPO wants to be the voice that advocates for all children with cancer in the world and therefore invites every interested country to join in order to help, learn and assist each other. We want to make sure that every child has access to potentially life-saving treatment. Together with the professionals of the pediatric oncology team, parents and parent organizations worldwide need to work together to help families throughout this most difficult period - no matter what the outcome. Thus, hand in hand, we can make a difference! Education, help and assistance is not far away. If you are not a member already, you may register to become a member of ICCCPO. 
The annual membership fee is $500 for a nation. If there is more than one group in your country, you can split this amount (however, one nation, one vote). But money, or rather, the lack of money, should not prevent you from joining the international confederation. If your organization does not have the financial means, please indicate this in your application. It is a matter of solidarity that those groups who are able to pay more take care of those who cannot. 

Address, phone, fax, e-mail
An urgent call to all ICCCPO-members and other groups that receive our newsletter: please keep us informed of any change of address, phone- or faxnumber, and send us your e-mail address if you have one. 

The International Resource List
The international bibliography which lists written and audio?visual resources developed by parent groups and professionals in individual countries is nearing completion. We are waiting now to receive the final editing comments to the draft, and then it will go into print and will be distributed soon. Our goal is to have it available early next year.
If you have resources that are not yet included and that you would like to have written up in the bibliography please send them to:
Candlelighters Childhood Cancer Foundation Canada, 
55 Eglinton Avenue East,
Suite 401, Toronto, Ontario. M4P 1G8. 
We can include them as long as we have them with an English and original annotation by the end of the year.
Please help us make this the most complete listing of publications around the world for children with cancer and for their families.

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

Interesting sites on the WorldWideWeb:
Caroline and Christer homepage (the internet project of Sweden):
http://www.it.kth.se/~pbercoff
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New Books

New translations of the Chemo-Kasper book
Chemo-Kasper is now also available in French, Russian, Lithuanian and Latvian. 

The French book Gaspard-Chimio has been edited by the Swiss group (translation by the Inselspital Bern/Switzerland).
Orders: Schweizerische Interessengemeinshaft für krebskranke Kinder, Sonnenrain 4, CH 4534 Flumenthal, fax +41 32 637 3085. Price: SFr.5:- plus shipping. 
The Russian, Lithuanian and Latvian translations have been published by the German group. 
Orders: Deutsche Leukämie-Forschungshilfe
Joachimstrasse 20, D 53113 Bonn, Germany, 
fax +49 228 9139433, e-mail DFLH@t-online.de.

Surviving childhood cancer: all's well that ends well!?
With the increasing survival rates of children with cancer parents have the need to know more about the long term consequences of childhood cancer. Therefore, in 1996 the Dutch parents association 'Parents, Children and Cancer' published a booklet 'Surviving childhood cancer: all's well that ends well!?' This booklet is written by Dr. J.E.W.M. Van Dongen-Melman, Sophia Children's Hospital / University Hospital Rotterdam, and is based on her extensive study on the late psychosocial consequences of childhood cancer for the whole family: patients, parents and siblings. The aim of the booklet is to provide information and support for the growing group of families with a child who has been cured from cancer. Right from the start the booklet proved not only to be a valuable help for those families, but also contributed to a better understanding of their needs and problems by the environment, such as family, friends, school, and work.
This booklet is now also available in English. Orders (free of charge): Vereniging 'Ouders, Kinderen en Kanker', Achterdijk 85, NL 3985 LA Werkhoven, Netherlands, fax + 31 343 551969, e-mail mcnaafs@worldaccess.nl .
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Announcements

The Paediatric Oncology Unit of the Hospital J.M. de los Rios in Caracas will organize its 
First International Meeting.   November 19-22, 1997 in Caracas, Venezuela.
This meeting will include a parents meeting on November 21th 1997.
Mark Chesler and Jesús Maria Gonzalez Marín will represent the ICCCPO.
Information: Jesús Maria Gonzalez Marín, phone: + 34 6 347 1300, fax + 34 6 347 2754, e-mail: 
aspanion@vlc.servicom.es

The Third Continental Meeting of the International Society of Pediatric Oncology in Africa will be held in Rabat (Morocco)  May 20-23, 1998
Main topics: Epidemiology of childhood cancer in Africa, Non Hodgkin Lymphoma and Nephro-blastoma.
This conference will include a parents meeting, organized by l'Avenir, the Moroccon parents organization, and the International Confederation of Childhood Cancer Parent Organizations (ICCCPO). 

For information: Prof. Fouzia Msefer Alaoui, La Maison de l'Avenir, Route de Oued Akrach, Hay Nahda II, Rabat, Morocco, phone: + 212 775 41 74, fax + 212 775 60 11.

The International Confederation of Childhood Cancer Parent Organizations (ICCCPO) will hold its 5th General Assembly from September 4-6,1998 in Frankfurt, Germany.
We plan an interesting variety of workshops and contributions. If you have any suggestions, let us know, send your abstracts (deadline: March 1, 1998). Plan to bring your informative material and everything you would like to share with other groups.
For information: Gerlind Bode
phone: +49 228 9139430,
fax: +49 228 9139433
E-mail: DLFH@t-online.de

PAPOS - Pan African Psycho-Oncology Society 

Cancer in Africa IV - Comprehensive Care 2000 & Beyond
September 23-25, 1998.  Conference Center Windhoek-Namibia
For information contact: Sadie Cutland
50 Dawn Drive, Northcliff
2195 Johannesburg, South Africa
tel. + 27 11 678 3803, fax + 27 11 678 4863

The 30th Meeting of the International Society of Pediatric Oncology (SIOP) will be held in Yokohama, Japan,  from October 4-8, 1998.
The main topic is Neuroblastoma.
ICCCPO and the Childhood Cancer Association of Japan will organize a two days parent meeting on October 6-7.
For information: Marianne Naafs-Wilstra
tel./fax +31 343 551969
E-mail: mcnaafs@worldaccess.nl
or Mr. Keji Iwata, tel. +81 3 5228 6105
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