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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


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


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.




Credit Europe Regional Committee of Childhood Cancer International (CCI)