A word from the editors

Thanks and greetings to all who attended the parents meeting at the SIOP Conference in Vienna. It was a good and productive series of lectures and hopefully also stimulating for those who were present for the first time. We hope to see you again at another meeting. It was a pleasure being together with all of you to share experiences, information and ideas. 

The importance of the presence of parent groups was recognized by all speakers at the opening ceremony. Parents are indeed a vital part of the pediatric oncology team, and the International Confederation of Childhood Cancer Parent Organizations (ICCCPO) tries to achieve full recognition of their role everywhere.

Under the heading ICCCPO News you can find the list of countries which are members of ICCCPO at this very moment. Their full addresses are in the list of all groups we know, which we include again in this newsletter - hoping that you cab help us update it.

Contributions to the next newsletter can be sent to the editors (if possible on diskette WP 5.1) before 1997. 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 welcoming you at our General Assembly in Johannesburg in May 1997, at the SIOP Conference in Istanbul in September 1997, or at one of the other meetings ICCCPO organizes or participates in.

Gerlind Bode
Marianne Naafs-Wilstra 

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ICCCPO News

Psychosocial care for the terminally ill child
At the SIOP Conference in Vienna in October 1996 some board members of the ICCCPO participated in the sessions of the psychosocial working group. Thus ICCCPO is involved in writing the guidelines for the psychosocial care for the terminally ill child and its family. 

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 youn from joining the international confederation. If your organization does not have the financial means, please indicate this in your application. It is a question of solidarity that those groups who are able to pay more take care of those who cannot. 

Members of ICCCPO

At this moment members of ICCCPO are: 
Canada (Candlelighters, national)
Denmark (Foraeldreforeningen Barn og Unge med Kraeft, national)
Finland (Sylva, national)
Germany (Deutsche LeukamieForschungsHilfe, national) 
Greece (Floga, local)
Iceland (SKB, national)
Italy (national confederation)
Latvia (national)
Morocco (L'Avenir, local)
Netherlands (Vereniging Ouders, Kinderen en Kanker, national)
Norway (SKB, national)
Portugal (Acreditar, national)
Spain (national confederation)
South Africa (CHOC, local)
Sweden (Barncancerfonden, national)
Switzerland (IG für krebskranke Kinder, for the German speaking part) 
United States of America (Candelighters, national)
Yugoslavia (Zvoncica and Uver sa Decom, local).
For the addresses please see the attached list of groups.
We have received applications for membership from several local and national organizations. These are pending ratification by the General Assembly. 

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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