Information in English
Vereniging 'Ouders, Kinderen en Kanker' (VOKK)
The Dutch Childhood Cancer Parent Organisation (VOKK) is a national organisation of parents of children with cancer and was established in november 1987.
Membership
Members
Parents, grandparents and guardians of (cured and deceased) children with cancer, siblings and long term survivors of childhood cancer can become members of VOKK.
Associate members
Professionals and others can become associate members of VOKK.
Goals
Improve the quality of life of children with cancer and their families, no matter the outcome by:
- support of parents and families
- information
- advocacy
National office
Vereniging 'Ouders, Kinderen en Kanker' (VOKK)
Marianne C. Naafs-Wilstra, executive director
Schouwstede 2d
NL - 3431 JB Nieuwegein
tel. 030 - 242 29 44
fax 030 - 242 29 45
e-mail: bureau@vokk.nl
Organisation
- Organisation
- National board (consisting of members)
- National office
- Committees
- Information
- Editorial staff Attent (quarterly)
- Editorial staff LEF (youth magazine)
- Fundraising & PR
- Ethics and Phase I/II Trials
- Brain tumours
- Retinoblastoma
- Fanconi Anaemia
- Young adults
- Survivors
Activities
- Information
- Newsletter, Attent
- Youth magazine, LEF
- Books, brochures, video's
- School programme (back to school kits)
- Yearly two national conferences for parents and professionals
- Website
- Library and information centre
- Lectures and workshops
- Personal contacts
- Telephone line
- Forum on the website
- Self help meetings for:
-
- parents of a child in or after treatment
- parents of a child with a brain tumor
- bereaved parents
- grandparents
- parents of a child with retinoblastoma
- parents of a child with Fanconi anaemia
- survivors of childhood cancer
- For children and adolescents
- weekend camps and day activities for children - mixed patients, survivors & siblings
- groups for bereaved siblings
- meetings for teens and young adults - mixed patients, survivors & siblings
- weekend camps and special day activities for teens and young adults - mixed patients, survivors & siblings meetings for young adult survivors
- meetings for young adult siblings
- forum and chat on the website
Advocacy
- Meetings and cooperation with:
- the Paediatric Oncology Centres
- the Paediatric Bone Marrow Transplant Centres
- Dutch Childrens's Oncology Group (SKION)
- Paediatric Oncology Nurses Forum (LWKOV)
- Dutch Paediatricians Assocation (NVK)
- National workgroup of Social Workers in paediatric oncology
- Dutch Cancer Society (KWF)
- Associations of chronically ill children
- Hospital schools
- Meetings with:
- Departments of Health and Education
- Others:
- Representation of parents at congresses etc.
- Articles in different periodicals, newspapers and magazines
Member of
- Founding member of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO)
- Dutch Federation of Cancer Patients Organisations (NFK)
SAINT SILUAN* WARNING SIGNS FOR CANCER IN CHILDREN
S: Seek: Medical help early for persistent symptoms
I: Eye: White spot in the eye, new squint, blindness, bulging eyeball
L: Lump: Abdomen and pelvis, head and neck, limbs, testes, glands
U: Unexplained: Fever, loss of weight and appetite, pallor, fatigue, easy bruising or bleeding
A: Aching: Bones, joints, back, and easy fractures
N: Neurological signs: Change in behaviour, balance, gait, and milestones, headache, enlarging head
Dissemination of the Saint Siluan warning signs is an initiative of ICCCPO in cooperation with SIOP.
*Saint Siluan was a Russian monk who died on Mount Athos (Greece) in 1938. He prayed ceaselessly for all humanity.