Beyond the emotional ordeal for parents confronted with their child’s cancer are logistical issues, concerns about how to announce the diagnosis and a need for support when faced with the impact of the disease on their child, their family and their emotional and physical state.

These difficulties often deepen parents’ feeling of isolation faced with too many questions about a worrying, unknown world.

The expert panel has therefore created a digital space where children, families and loved ones can find advice and information on improving quality of life during this illness.

A simple and unique portal with reliable content for children, parents, brothers, sisters and other loved ones

While parents may find it easy to turn to the Internet, patience is often needed to find accurate and understandable information.

Designed as a hub, a kind of Google for childhood cancer, the portal was created to save time and access high-quality information and personal stories in a single location. In order to provide the best the Internet has to offer to help and support families, the website gathers all the existing resources approved by the community and will curate information daily.

“From the moment your child is diagnosed with cancer, thousands of questions come into your head. You don’t always have time to ask the doctors, or the desire to say them out loud. Sometimes, care teams don’t even know how to answer them.” Ruth Hoffman, President of Childhood Cancer International

A human space centred around quality of life and organised into profiles Designed to be useful, practical and friendly, this portal is structured around information and advice covering three main areas of everyday life:

  • communicating with your child, your partner, your doctor, school and work
  • feelings experienced during the different stages and development of the disease, as well as the treatment phases
  • day-to-day life addressing key issues like stress, fatigue, diet, helpful and available aid, the concept of time, etc.

“I am delighted about the international roll-out of this programme, as the issue of quality of life for young children and families does not stop at the French border.” Catherine Vergely, Secretary General of the UNAPECLE

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