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Patients' Families Advocacy Groups 

Paediatric Cancer Support Groups

One of the challenges facing the family of a child who has cancer is normally coping with everyday life. Moving forward is not an easy task. It may be even harder during periods of stress: when you find out your child has cancer, when your child is in the hospital, or when your child is suffering from the side effects of treatment. As a parent of a child who has cancer, remember that you are not alone. You can get help from cancer support groups; where you will be given the opportunity to talk to people who understand what you're going through. By joining a cancer support group you can spend time with people who share or understand your experience. This simple act of sharing can make an enormous difference to the way you feel.
More information

 

ENCCA's involvement in parent/patient advocacy

As part of its aim to restructure knowledge-sharing through the integration of all stakeholders from the European paediatric oncology community, ENCCA is closely working with cancer support groups, whose views are of great importanceto ensure that this all-encompassing project remaining patient-centred.

Cancer support groups are there to share information and experience to improve access to the best possible care for children with cancer everywhere in the world. An average of 80% [1] of the World’s children with cancer do not have access to life-saving treatment, and support groups are working together to tackle this problem by promoting greater awareness and understanding of childhood cancer, with a special emphasis on improving access to advances in the treatment and care of childhood cancer patients.

In ENCCA, cancer support groups are managed by the partner ÖK[2], representing the interests of the European branch of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO) whose mission is to focus on the cooperation and sharing of experiences between parent groups at international and national levels, so that all can benefit from it and become more effective in improving the treatment and care of children with cancer in their own countries. Most importantly, ICCCPO is aiming at creating a national voice for parents of children with cancer, by working on a national level with medical, government and charity organisations, to address issues affecting children with cancer and their families.


Teenagers and Young Adults

Several activities have been specifically launched for teenagers and young adults with cancer (TYA). TYA are best cared for in multi-professional teams, where adult-trained and paediatric-trained physicians work together with other professionals to treat this patient group. However, it is not always the case- there is not always collaboration between paediatric-trained and adult-trained doctors and others to meet the very specific needs of this  patient group, and a need to develop a skills/competency framework for professionals who treat TYA from a medical, nursing and other professional perspectives. TYA concerns are not always put at the centre of the care they receive. Not enough TYA enter clinical trials.

At present, two bodies within ENCCA work on TYA issues:

 
 

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[1] Source ICCCPO
[2] Österreichische Kinder-Krebs-Hilfe verband der Osterreichischen kinder krebs hilfe organisationen)