Patients’ voice is fundamental to improve research and healthcare, to revise legislations, to create new policies.
Researchers, doctors and policy-makers need clear guidance on the challenges encountered by a family of a paediatric cancer patient. SIOPE knows that the best guidance can be provided only by those being afflicted by the disease.
At SIOPE we believe that the medical needs of children shall be paired with measures to ensure the satisfaction of the unique emotional and social needs of the child and of his/her family. All health professionals, policy makers and stakeholders in our discipline should consider the impact of cancer treatment on children and their families.
SIOPE provides a strong and reliable step stone for patients and their families to approach policy makers, researchers and other stakeholders. We believe that the voice of those afflicted by paediatric cancer shall be heard from all the other actors fighting against the disease.
We proactively liaise with patients’ organisation, not only involving them in our activities, but placing them at the core of our projects.
SIOPE and parent and patient organisations – including survivors’ groups – joined forces to ensure that children receive the best possible care, at the time of diagnosis and beyond. SIOPE takes into account the needs of childhood cancer patients and parents into its positions and advocacy activities.
- Contact details of European childhood cancer parent organisations
- Patient Advocacy Track at the 17th European Cancer Congress, 27 September-1st October 2013, Amsterdam
- ENCCA Parent Patient Advocacy Committee (PPAC)
- PanCareSurFup: EU project on childhood and adolescent cancer survivors and follow-up studies
Interesting links for young patients:
- Cure 4 kids for healthcare professionals, in English, Spanish, Chinese, Portuguese and Russian
- Look Good…Feel Better
- Jimmyteens TV (UK) video diaries
- Kids Cancer Network (US)
- Child Cancer (UK)
- Teens living with Cancer (US)
- Click 4 Tic (UK)