International Childhood Cancer Survivors Network (ICCSN), March 2013Titelblatt_Handbook

  • April
  • 20
  • 2014

First edition of the ICCSN Handbook “Establishing a survivors group and keep it going” is available online.

The first ICCCPO survivors meeting was held in 2001 in Luxembourg. Since that time an ongoing topic is “How to establish a survivors group and keep it going”. By the international exchange survivors from different countries were inspired to set up a group in their region or country or offer special activities for survivors and patients.

The International Childhood Cancer Survivors Network (ICCSN) was established. It is a part of ICCCPO and it connects adult childhood cancer survivors groups globally. One aim of ICCSN is to encourage the implementation and development process of national and local survivors groups. That`s why some committee members created a handbook, which consists of a collection of documented experiences and knowledge already available in some countries.

The main objective of this handbook is to give support to survivors and all those interested in establishing a survivors group or keep an already existing group going. The target group can range from survivors, parents, doctors, nurses, psychologists, social workers, friends of affected persons/families to interested people. The handbook should give everyone who works in this field a wealth of ideas and inspiration.

The handbook offers a variety of ideas for the founding of survivors groups or for the leadership how to keep a group going. It can be seen as a guide from which one can draw one’s own conclusions and in consequence, use this information to set up an own model which fits best. It can be a good tool for a kick-off meeting if you want to start a group or help you to redefine the aims and structures of the group.

This handbook is divided into two parts: The first part deals with the aims and goals of survivors groups, what has to be considered to start a group, and information about possible structure and activities. For the second part some already existing groups provided reports about their groups or organisations (so far there are contributions from Austria, Germany, Greece and New Zealand).

Finally it cannot be taken for granted that former patients become involved in working for patients and/or survivors. But if there are dedicated people involved it is such a big enrichment for the childhood cancer community as it is important that survivors get visible and do activities which are based on the needs of the survivors themselves; and of course for the survivors themselves it is an enormous enrichment -; keyword: empowerment!

Survivors groups are of essential support for survivors themselves, because the aims of survivors groups, which range from providing social contact, sharing experiences and knowledge to giving back hope to those  who are living with cancer is very important.

Download PDF: Handbook – Establishing a survivors group and keep it going (First edition 3/2013)

View PDF via Flip page: Handbook – Establishing a survivors group and keep it going (First edition 3/2013)