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Partnership with patients, survivors
and parents
Building a partnership with patients,
survivors, and parents’ organisations is
essential to achieve the goals of SIOPE in
terms of research, equal access to standard
care and expertise, advocacy when new
policies are developed and strategic
decisions made at the national and European
levels.
Childhood Cancer International (CCI)
is a
worldwide childhood cancer organisation
that represents families of children with
cancer and childhood cancer survivor groups.
SIOPE has been working with the CCI Europe
Regional Committee for several years,
including partnerships in several European
projects and initiatives.
In 2011 the
Parent and Patient Advocacy
Committee (PPAC)
within ENCCA was
created with CCI Europe Region Committee
members, and consists of representatives
from different national parents and survivors
organisations. Since then, they have
been building networks between parent
and survivor groups and organisations,
disseminating health policy-related issues
within Europe and improving the training
of representatives of patients survivors and
parents in clinical research to make them
powerful advocates and partners in this field.
ENCCA, SIOPE and PPAC also worked
together in joint research and dissemination
activities, as well as the development of a
long-term sustainable strategy for paediatric
oncology in Europe, the present SIOPE
Strategic Plan and the seven medical and
scientific objectives.
SIOPE and the CCI Europe Regional
Committee entered into a co-operative
relationship in order to implement the
European long-term Strategic Plan and to
raise awareness on cancer in children and
adolescents. They signed a
Memorandum
of Understanding
that sets out the
specific areas of cooperation along with
the principles by which both parties will
run the partnership. The four areas are: i)
ethics and social sciences and humanities, ii)
access to standard of care and expertise, iii)
improvements to the regulatory and political
environment at the pan-European and
national level, iv) research and development.
Partnerships
THE SIOPE STRATEGIC PLAN
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Credit Europe Regional Committee of Childhood Cancer International (CCI)