The number of groups represented at the ICCCPO-meeting in Frankfurt (Germany) was so large that it was impossible to give all group-representatives time to introduce themselves. Thus we had each of them write some of their most important items on a large sheet of paper, which were hung up on the corridor of the seminar building. Thus everybody was able to look at what the others had to tell them and could raise questions or discuss several points with the representatives present. These write-ups reflect the variety of the groups all over the world and give an insight into the most prevalent problems. We start to present them here in an alphabetical order according to the country.

Austria: Kinder-Krebs-Hilfe
Local groups: 6 (Wien, Linz, Graz, Salzburg, Innsbruck, Klagenfurt)
Major success: - BMT
- Research-Institute
- home-nursing
- financial support for families
Major problems: - jobs for cancer survivors
- volunteers
ICCCPO member: yes

Republic Belarus: BELORUSSIAN REPUBLIC SOCIETY "CHILDREN IN TROUBLE"
Contact person: Eugeny Ukraintzev / Valentina Pokhomova
Local groups: 18 (Minsk and Gomel)
Major success: setting up rehabilitation home
being able to help families in need
providing a flat for parents whose children are in treatment
Major problems: - lack of money
- co-operation with medical staff
- lack of medicine
- recruitment of volunteers for work in organization
- difficult financial situation of families with sick children
ICCCPO member: NO

Belgium: KINDERKANKERFONDS (Gent)
member of V.L.O.K.K. - - Federal organization (Dutch language)
Contact person: Francky Vercruysse
Local groups: 1
Major success: - material help in the hospital - comfort
- vacations for sick children
- yearly party for patients / ex-patients and families
Major problems: - cooperation with medical staff
- finding "new" volunteers
ICCCPO member: not yet

Belgium: V.Z.W.Wegwijs (Leuven) 
member of V.L.O.K.K. - Federal organization (Dutch language)
Contact person: Myriam Van Oosterwyck
Local groups: 1
Major success: - long term survivors group: Quilt
- videotape for schools: "How is Nils?"
- education-set for schools
- possibility for family holidays for the hole family of the sick child
- clinic clowns on the oncology department one's a week
Major problems: Volunteers: how to find them?
ICCCPO-member: No

BULGARIA "TASHKO" Humanitarian Foundation, Plovdiv
Contact person: Dimitar Tashkov, 4000 Plovdiv, P.O. Box 212, e-mail: tashko@mbox.digsys.bg, tel. + 359 32 274 005, fax +359 32 622 954
Local groups: 4
Major success: - Designing the draft of a preliminary project of the Paediatric OH Clinic with a bone marrow transplant centre in Plovdiv
- Raised 200 mln. lv. /USD 100 000/ worth of life-saving medicins, equipment and others for the Paediatric Oncohaematological Ward, Plovdiv
- Helping fundraised of 2 x USD 70 000 for the bone marrow transplantation in Israel of two children
- Children pictures' competitions for Christmas and First Spring post envelops and cards.
- Establishment of "Tashko" Foundation branches in Varna, Stara Zagora and Rousse.
- 2150 donors and hundreds of volunteers for the 7-year existence of the Foundation.
Major problems: - Lack of funds to cover running costs
- Lack of experienced people to work in the NGO charity social field as well as in the small social business activities /Charity Markets.
- Present NGO's legislation is depressing the Bulgarian NGOs /out of about 5600 registered NGOs in Bulgaria not more than 500 are active at present.
ICCCPO member: Not yet

Canada: THE CHILDHOOD CANCER FOUNDATION, CANDLELIGHTERS CANADA
Contact person: Eleanor Pask, Christine Wandzura
Local groups: 40
Major success: - - National and International Library and Resource Center
- Biannual Parents Conferences
- ICCCPO Secretariat - Jan / 98
- Great staff & working Board
- "Keeping Our Mission #1"
Major problems: Too many good programs to do - never enough money to fund them!
ICCCPO member: yes

Croatia: SANUS
Contact person: Bozena Anic
Local groups: 2 (Split and Zagreb)
Major success: collecting money for new equipment for our hemato-oncology department
Major problems: We have so many problems, that this paper is too small, but most of them are of financial matter.
ICCCPO member: not yet

EGYPT: AGCCC - ALEXANDRIA GROUP OF CHILDHOOD CANCER CARE 
Contact person: Dr. Yasser Saad-Eldin
Local groups: 1
Major Success: - The society was oriented by the group and got the message.
- 5 parents are now members of the group.
Major problems: To get more parents ready to lead the activities.
ICCCPO member: not yet

England: The Lisa Thaxter Trust
Contact person: Gill Thaxter
Local groups: 1
Major success: - funding co-ordination of UK research
- Christmas gift-wrapping service: £ 40 000 in 1997
Major problems: Doctors need to work together. 
ICCCPO member: not yet

England: CLIC, Cancer & Leukaemia in Childhood (Bristol)
Contact person: Andrew Larpent
Local groups: 23
Major success: - 6 homes from home (2 more planned)
- 30 funded community nurses
- 23 clinical funded posts
- support for research
- care grants for families
Majors problems: - survivors group for the UK
- coordination with UKCCSG
- camp program
- teenage program
Aims: Hosting UK National Conference of Support Groups in April 1999 
in Bristol.
Working with UKCCSG (Doctors Group) to create a National 
Grouping to join ICCCPO.
ICCCPO member: not yet

Estonia: ESTONIAN ASSOCIATION OF PARENTS OF CHILDREN WITH CANCER
Contact person: Marje Oja
Local groups: 1
Major success: That we have our parent organization. It is small but strong and developing.
Major problems: How to make our voice be heard!?
How to improve our cooperation with medical staff.
ICCCPO member: not yet

Finland : SYLVA R.Y. (Helsinki) 
Contact person Leena Vasankari
Local groups: 12
Major success: - information materials about cancer and children
- holidays for families
- flats for families / hospital
- equipment to hospitals
- seminars for families, doctors, nurses
Major problems: MONEY
ICCPO member since 1994

Germany: - DLFH - Deutsche Leukämieforschungshilfe
Contact person: Dr. Gerlind Bode / Ulrike Baum
Local groups: 54
Major success: - 1-2 million DM for research
- annual prize for psycho-social achievement
- financial support of families (1 million DM /annual)
Major problems: - to recruit new parents 
- to find more support
ICCCPO member: Since 1994

Greece: "FAITH" PISTI, CHILDREN CANCER FOUNDATION (Athens)
Contact person: George Despotidis
Local groups: 6
Major success: 400 parents are now member
Major problems: financial
ICCCPO member: no

Greece: FLOGA (Athens)
Contact person: Pan. Kolias, 
local groups: 5
Major success: best medical, psychological, social care of children
Major problems: - hospital equipment
- the absence of public assistance
- funds
- home care
ICCCPO member: yes

Greece: IASO - (THESSALIAN ASSOCIATION OF PARENTS AND FRIENDS OF CHILDREN WITH CANCER (Larissa)
Contact person: Dimitris Lioussas
Local groups: 6
Major success: the common (similar) wish to help people with cancer problems
Major problems: to find money
ICCCPO member yes

Iceland: STYRKTARFÉLAG KRABBAMEINSSJUKRA BARNA
Contact person: Torsteinn Olafsson
Local groups 1
Major success: TV- / Radio Fundraising in 1993
Major problems: To have the Icelandic government understand that childhood 
cancer families have special needs.
ICCCPO member: yes

Iran: MAHAK (Teheran)
Contact person: Ms. Ladangol-Arasteh
Local groups: 1
Major success: That, given all the problems, we managed to start such a group and now provide information and financial support to families.
Major problems: That a hospital dedicated to the care of children with cancer does not exist and is needed.
ICCCPO member: not yet

Indonesia: YOAI - Indonesian Childhood Cancer Foundation (Jakarta)
Contact person: Mrs. Ira Soelistyo
Local groups: 6
Major success: - basic courses on pediatrics oncology (for doctors and professionals)
in association with SIOP and ESO in 1994, 1995 and 1996
- seminars for publics - each year
- short course for nurses (1995)
Major problems: - data registry
- no suitable facilities specially for children
- difficulties in fund raising
- expensive medicines and treatment
ICCCPO member: not yet

Israel: HAYIM (Petach-Tikva)
Contact person: Eve Nover, Orren David
Local groups: 4-5
Major success: - reunion of 1000 cured children that were treated and cured in Isreal.
- trips of children on therapy to London, Kenya etc.
- financing state of the art medical equipment
- to enable top quality treatment of children
Major problems: raising enough funds to meet the growing needs
ICCCPO member: not yet

Italy: COMITATO MARIA LETIZIA VERGA (Monza)
Contact person: Pia Bonini
Major success: - to build a new outpatient clinic
- to build a new transplant center
- to set up parents self-help groups
Major problems: - how to take care of ????
- to raise money to complete our new family house which is now under construction
ICCCPO member: Yes

Japan: THE HOPE FOUNDATION - CCAJ, CHILDREN CANCER ASSOCIATION OF JAPAN 
Contact: Keiji Iwata / Saburo Kareko
Local groups: 13
Major success: 30 th SIOP parent meeting Oct 4-6
Major problems: development of parent houses
ICCCPO member: yes

Latvia: LATVIAN CHILDHOOD CANCER FOUNDATION (Riga)
Contact person: Ivars Vtkis (founder), Tamara Bula (president) 
Local groups: 2
Major success: - fund raising for medical equipment, blood donors
- information, cooperation with other countries
- information sources for parents
- cooperation between doctors and parents
- organization of PCU in the children hospital
- social support of parents, children, psychological help
- parents' house's project and support for it
ICCCPO member: yes

Lithuania: PAGUODA LITHUANIAN SOCIETY OF CHILDREN ONCOHEMATOLOGICAL DISEASES (Vilnius)
Contact person: Maryana Chemeliauskiene (chairwoman)
Local groups: 1
Major success: 1998:charitable concert in Vilnius Filharmonie with Mr. Peter Schreier and Mrs. Gr. Landsbergiene
Major problems: children rehabilitation, medicine, found raising, support for parents
ICCCPO member: not yet

Luxembourg: Fondation "Aide aux enfants atteints d'un cancer"
Contact person: Marie-Marthe Bruck-Clees (Présidente)
Local groups: 1
Major success: summer camp: age: 7-15 girls and boys
Major problems: problems of the psychological service and the psychological
guidance and the follow up of the whole family
ICCCPO member: no

Mexico: AMANC (Asociacion Mexicana de Ayuda a Minos con Cancer)
Contact person: Lupita Alejandre
Local groups: 14
Major success: All oncological medication for each AMANC child (very, very 
poor children with no social security / government doesn't pay for cancer treatment)
We are implementing assistance from four states in the Republic of Mexico - helping set AMANC's parents groups and helping those groups with chemo so they don't have tog o all the way to Mexico City for treatment.
A new shelter for more children and parents
Major problems: Raising funds
Making the public aware of the fact hat childhood cancer is curable in 70% of the cases
ICCCPO member: not yet

Netherlands: Vereniging Ouders, Kinderen en Kanker 
Contact person: Marianne Naafs-Wilstra
Local groups: 1 (we are a national organisation)
Major success: - diary
- information program
- school-program
- training of volunteers 
- full recognition of parents' role (excellent co-operation with professionals)
Major problems: - can we do all this work with volunteers only?
- how to guarantee continuity?
ICCCPO member: yes (since 1994)

New Zealand: CHILD CANCER FOUNDATION OF NEW ZEALAND
Contact person: Simon Lala
Local groups: 21
Major success: - raised $ 900.999 for research 
target is 1 million
- establishment of an internationally recognized palliative care 
course for nurses - for children
- a holiday home for our children and their families.
- 4 accommodation facilities for children under treatment.
Major problems: - government funding cuts
- recruiting - quality executive members
ICCCPO member: yes

Norway: STOTTEFORENINGEN FOR KREFTSYKE BARN
Contact person: Johan Fredrik Sandal, TLF 011 47 66773598
Local groups 13
Major success: - - information program
- psychosocial program
Major problems: - work load on parents
ICCCPO member: since 1995

Portugal: ACREDITAR
Contact person: Ana Correa Nunes
Local groups: 4
Major success: Our association is now well-known in Portugal and the 
society believe in our projects and support them.
Major problems: volunteers with disposability for the daily management
ICCCPO member: yes (since 1994)

Romania: P.A.V.E.L. PRIMIND AJUTOR VIATA ESTE LUMINOASA
Contact person: Olga Rodica Halmagi
Local groups: - one in Romania (group of parents)
- one in France (as group support)
Major success: publishing of 4 medical booklets
supplying drugs, furniture, food, different other
things for the onco-paediatric dept. of 3 hospitals in Bucharest 
organizing festivities for Christmas, Easter etc. in the hospitals
offering material supports (goods, drugs for parents of children with cancer)
contacting foreign hospitals or clinics for parents
establishing a small parents house (start this autumn)
Major problems: the lack of drugs in hospitals
the lack of proper medical equipment
the lack of normal conditions (food, hygiene) in hospital
the lack of a BMT-unit in Romania 
Major questions: How to get more financial support?
How to run (organize) a parents house?
How to involve more voluntary people?
ICCCPO member: no

Russia: HAEMATOLOGISTS OF THE WORLD FOR CHILDREN (Tscheljabinsk)
Contact person: Galipova, Rita
Major success: - The organization "CARE Germany" delivered modern equipment and medicine to the hospital's oncologic-haematologic department.
- The number of cured children increased from 20% to almost 80% over 5 years
Major problems: - The charity help by "CARE Germany" is coming to an end.
- We don't have enough medication.
ICCCPO member: NO

Russia : Elizabeth Children Charity Fund (Volgograd)
Contact person: Stankowa Tatjana (president)
Vladimir A. Tchernov (vice president)
Local groups: 1
Major success: - social assistance to cancer children and parents
- cooperation with Russian churches
- 2 international partners; Folk Singers
- group of cancer children
Major problems: - lack of medicine and funds; poor food in cancer hospital. We expect to share and benefit from success stories of other conference participants.
ICCCPO member: not yet

Russia: PARENT'S ORGANIZATION "NADEZHDA" (Novosibirsk)
Contact person: Irina Proskujakova (chairwoman)
500 members
Main goal: building up of a rehabilitation center east of the Ural in 
Russia
Major problems: fund raising for building the center, system of volunteer education
ICCCPO member: no

Russia: CHILDREN AND PARENTS AGAINST CANCER (St. Petersburg)
Contact person: Liudmila Kondrashova (coordinator)
Local groups: 2
Major success: Establishing contact with local authorities, starting / working out social-medical program of St. Petersburg "Children with cancer"
Starting /developing data base of all families with children with cancer of St. Petersburg
Major problems: Ignoring problems of children cancer on all levels of decision 
Lack of pharmaceutical and medical equipment
ICCCPO member: not yet

Russia: ISKRA NADESHDY, (Vladivostok)
Contact person: Tichonov, Vladimir Anatolyevic
Local groups: 2
Major success: - anniversaries
exhibition of children's paintings in VIENNA
- fundraising for medication 
- educational programs, professional programs
Major problems: old medical equipment
ICCCPO member: no

South Africa: C.H.O.C., Johannesburg
Contact person: Sadie Cutland
Local groups: C.H.O.C. is regional
Major success: - good psychosocial team
- in-patient ward comforts
- out-patient unit support / wheelchairs, toybank, volunteer group
- financial support of education of medical staff ® to conferences
- transport money for parents ® compliance
- bereavement counselor - supply 2 cars and all running costs.
Cellular telephones
- office-equipment, medical equipment
Major problems: CHOC house (coming) for parents from "out of town"
ICCCPO member: yes

South-Africa: TOUCH (Together united for children with cancer), Pretoria
Contact person: Ian Westby, Mario da Silva, Petra Barkhuizen
Local groups: 1
Major success: Only started a year ago. 
- Started a toy bank 
- Participated on a live radio talk show
- Involved with RAU university for fundraising for a pediatric ward (At the moment kids are sharing with adults!) 
Got Protea Hotels to supply free accommodation for parents undergoing stress
Major problems: - No children wards!!
- More public and government support
- Funds!
- Recruitment of parents and professional support e.g. psychologists for parents and children.
ICCCPO member: not yet

South Africa: TYGERBERG PARENT SUPPORT GROUP (Cape Town)
Contact person: Jeanette Dollman, Pauline Swanepoel 
Local groups: 1
Major success: - being part of dedicated team
- forming of bereaved parent group
- in process of establishing house for parents
- soon to go national with CHOC-S.A.
- to know that we alleviate suffering of parents - bereaved as well as 
survivors
Major problems: - fund raising
- involving all parents
- lack of security - theft
- ward understaffed
- lack of equipment
- large geographical area
ICCCPO member: not yet

Spain: FEDERACION ESPANOLA DE PADRES DE NINOS CON CANCER
Contact person: Rogelio Araujo Gil
Local groups: 13
Major success: national program "psychosocial aid to parents and children"
Major problems: the public health system
ICCCPO member: yes (since 1994)

Sweden: BARNCANCERFONDEN
Contact person: Barbro Eriksson
Local groups 7 
Major success: - research
- information
- education
- holiday home
- well known and nationally accepted
Major problems: Getting more parents to get involved with the work.
ICCCPO member: yes

Switzerland: SCHWEIZERISCHE INTERESSENGEMEINSCHAFT FÜR KREBSKRANKE KINDER (IG)
Contact person: Marianne Wursch
Local groups: 9
Major success: publication of information material (medical, psycho-social) for parents, teachers.
ICCCPO member: yes (1994)

Ukraine: ASSOCIATION OF THE PARENTS OF CHILDREN WITH CANCER (Kiev)
Contact person: Sergey Lipskikh
Tel. 044-216-53-16
Major success: We want to start!
Major problems: Our questions:- How to organize?
- How to find money for good treatment of the children in our country?
ICCCPO member: not yet

USA: CANDLIGHTERS CHILDHOOD CANCER FOUNDATION
Contact person: Mark Chesler
Local groups: 400
Major success: - newsletters / publications
- liaison with doctors / government
- education
ICCCPO member: yes

CAMPS:
France: L'ENVOL
Camps pour les enfants européens
Echouboulains (85 km south of Paris)
Contact: Susan Rofe (general information)
Michèle Bail (recruitment of children)
Major success: Opening of this medically supervised camp offers seriously ill children 12 days of fun in total security, where they can regain self-confidence and the will to combat their illness.
Major problems: 1. Obtaining agreement from all European social security systems to reimburse the child's stay at l'ENVOL .
2. Raising funds necessary to complement social security payment
3. Continual renovation / adaptation of the chateau / site to meet needs of varying children populations
ICCCPO member: NO

Ireland: BARRETSTOWN GANG CAMP (Co. Kildare)
Contact person: Margaret Bourke
Major success: now serve children from 18 countries in Europe
Major problems: language and culture barriers
ICCCPO member: no

Others: 
Yemen: NASHER'S ANTI CANCER INITIATIVE IN YEMEN (Aden-Dhala)
Contact person: Dr. Nasher Ahamed 
Local groups: 1
Major success: distribution of medicines to sick people in our country
Major problems: lack of medicines vis à vis the needs of the sick person
ICCCPO member: no

Jordan: GENERAL UNION FOR VOLUNTARY SOCIETIES (GUUS) Amman
Contact person: Dr. Hani Shaka'a
Local groups: 120
Major success: AMAL CANCER CENTER (ACC)- 120 beds
all needed therapies
Major problems: fund raising
ICCCPO member: no 

Switzerland: STIFTUNG ZUR FÖRDERUNG DER KNOCHENMARK-TRANSPLANTATION (Foundation for the Advancement of BMT)
Contact person: Candy Heberlein
Major success: The enormous success in setting up a bone marrow donors bank and grateful parents
Major problem: Typifying is too expensive in Switzerland
ICCCPO member: not yet

RUSSIA:  Magic Key, a non-profit, non-governmental charity organisation for rehabilitation of children with cancer and their families, Moscow 
Contact person: Mrs. Marina A. Bialik, Balaklavsky pr. 36-1-85, 113303 Moscow, Russia
tel. (095) 318-28-55, fax (7-095) 487-70-78, e-mail: marina@bialik.dnttm.rssi.ru
The organisation is leading to an improvement in cancer control by awareness, education, detection and prevention programs and support services.
Awareness: information leaflets for children and their families; legal and social security advice;
Education: training for mothers at home - so they can learn how to care for their child;
Support services: rehabilitation program for survivors and their families; psychological support for families;
financial assistance - for buying medicine, food, clothes; a family support network; social get-togethers, special celebrations for sick children and their families.
We are working together with some organisations in Moscow that provide different kinds of support to patients with cancer, their families and caregivers. The organisation participates in the creation of a network of organisations of parents of children with cancer and leukaemia. Any information and contact we'll use for support and education in these organisations.
ICCCPO member: No