Vaiko Širdies Asociacija

ECHDO (European Congenital Heart Disease Organisation) - tai organizacija, vienijanti Europos asociacijas, susijusias su įgimtomis širdies ydomis. Jos tikslas yra dalintis informacija, patirtimi, vienyti tokio pobūdžio organizacijas, tam, kad pasiekti geresnių rezultatų vaikų, turinčių įgimtas širdies ydas, priežiūros bei medicinos srityse. Vaiko Širdies Asociacija taip pat yra ECHDO narė. Gyvenantiems užsienyje, bei norintiems įsitraukti į tokių organizacijų veiklą, pateikiame visų ECHDO narių sąrašą:

AUSTRIA
Name: Herzkinder Österreich
Number of member families: approx. 300 families
Main goals:
· establish a nation-wide support net(work) for CHD children and their parents
· providing both spiritual and emotional support, both health-related and therapeutic assistance, as well as financial help
· improve the social situation (and integration) of CHD children and their families (both in the hospital and in their daily lives)
· provide information and guidance concerning social and legal issues
Contact:
Herzkinder Österreich
Kinderspitalstr. 1/30
A-4020 Linz
www.herzkinder.at

Michaela Altendorfer: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Mobile: +43-663-520 09 31
Petra Sitter: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Phone: +43-7942-74979
Mobile: +43-664-122 14 71


BELGIUM

Name: Hartekinderen vzw. Mr. Peter V/d Broeck
Number of member families: 512
Main goals:
Hartekinderen is a Belgian independent, non profit parent organisation which aim is to bring together parents whose children suffer from congenital heart defects.
The organisation contributes to solutions for medical, psychological, social and pedagogical problems to which parents and children are faced: housing, education, medical accompaniment, transport, study choice, employment, recreation and family planning e.g.
Contact:
Hartekinderen vzw
Mr. Peter V/d Broeck
Elzenlaan 20
2390 Malle
Belgium
www.hartekinderen.be

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BULGARIA
Name : Association „Child’s heart“
Number of member families: Our members are 100 families, but potentially member can be any family with child with chronic disease
Main goals:
· Work for improvement of the quality of life of children with cardiac and other chronic diseases
· Assure children and their families with psychological, social and health support
· Work for their adequate integration in the society
· Decrease social isolation of the families with child with chronic diseases
· Make their problems and possibilities more popular
Activities:
· Psycho-social counselling: - professional psychological, social, medical, law and family consultations for chronically ill children and their families;
· Club activities e.g. “Young heart” – includes young people over 18, who underwent heart surgery in childhood.
· Rehabilitation programmes
· Seminars about psychosocial problems and integration. Support trough the association team to create local services for families with chronically ill child.
Contact:
Mrs. Mila Markova
Sofia 1609
3 Lakov Kraikov Str.
www.childsheart.eu

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Phone: + 359 2 953 28 66

CATALONIA
Name : aacic (the Association for Help to those Affected by Congenital Herat Problems in Catalonia)
Number of member families:
Main goals:
· Support service to children, teenagers and youngsters with congenital cardiopathies
· Psycho-social attention service and of accompaniment to families with heart
· Service proferring advice and attention to professionals
· Information and advice service for centers of early intervention and stimulation and professionals who intervene from early childhood
· Information and advice service in educational centers
Contact:
NENS I JOVES AMB CARDIOPATIA
www.aacic.org

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Phone: + 93 458 66 53

CZECH REPUBLIC
Name : Srdickari - Czech Association for CHD children and their parents
Number of member families: 20
Main goals:
· psychological support
· inform the public about children with heart disease
· social support
· meetings for families with CHD children, incl. physiotherapy
· public discussion on web page for CHD children
· organisation of seminars with doctors and other professionals
Contact:
Srdickari
Mrs. Michaela Bosakova
Za Kovarskym rybnikem 267
149 00 Praha 4
www.srdickari.cz

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Phone (mobile): +420 603 262 405

CYPRUS

Σύνδεσμος Γονέων και Φίλων καρδιοπαθών Παιδιών

Γράμμου 11

Πολ. Καρυάτιδες, Διαμ. 15

2006 Στρόβολος

Κύπρος / Cyprus

Name: Syndesmos Goneon kai Filon kadiopathon Paidion
The Association of Parents and Friends of Children with Cardiac Diseases
Number of member families: 850
Main goals:
· inform the public about Congenital Heart Disease (CHD)
· Support for parents with children as well as adults with CHD
· Financial support for families
· Psychological support
· providing information for families who are travelling abroad for their child’s operation
· organisation of lectures by doctors and other professionals
· Heart Week Awareness Campaign
· Fundraising events
· Cooperation with Ministry of Health in order to protect CHD patient’s rights
Contact:
Syndesmos Goneon kai Filon kadiopathon Paidion
Mrs. Stella Eleftheriadou (President)
Τ.Θ. 28671
2081 Akropolis, Nicosia
Cyprus
www.pediheart.org.cy

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Phone: +2231 51 46 96

DENMARK
Name: Hjerteforeningens borneklub
Contact:
Hjerteforeningens borneklub
Helle Meinhardt
www.hjerteforeningen.dk

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ESTONIA
Name: MTÜ Südamelaste Tugiühing
Number of families: 50 families
Main goals:
- joining and supporting families with CHD children
- Co-operation with doctors, state authorities, other non-profit organisation e.g.
- educating and informing about the problems of CHD
Contact:
MTÜ Südamelaste Tugiühing
Mr. River Tomera
Nurmenuku 16
Keila
Estonia, 76609
www.sydamelaps.ee

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Organisation: board, chief management: River Tomera, Jüri Alasi

FINLAND
Name: Sydänlapset ja -aikuiset ry, Finnish Association for Heart Children and Adults
Number of member families: 1938 members/member families
Main goals:
· secure efficient and good care for all the patients with CHD in Finland
· offer versatile information and knowledge about the CHD
· provide rehabilitation possibilities
· support and guidance for all the patients with CHD and for the people affected by CHD
Contact:
Sydänlapset ja – aikuiset ry
Mrs. Katja Laine
Oltermannintie 8
00620 Helsinki
Finland
www.sydanlapsetjaaikuiset.fi

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Phone: +358 (0)9 7527 5275
Mobile: +358 (0) 44 2727 717

FRANCE
Name: Association nationale des cardiaques congenitaux (ANCC)
Number of member families: approx. 450 families
Main goals:
· deliver all the necessary (psychological, social, emotional and health) support to children with CHD and their parents
· counselling to achieve integration in school and professional life of CHD children and their families
· service to exchange of experiences
· give information about civil liberties for disabled persons
· provide meetings about medical, paramedical and psycho-social issues with cardiologists, gynecologists, surgeons, nurses…
· raise awareness for CHD and participate at prevention campaigns for cardiovascular disease , the first cause of death in France
Contact:
ANCC
Marie Paule Masseron
Château des Cotes
F - 78350 – Les Loges en Josas
France
www.ancc.asso.fr

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GERMANY
Name: Bundesverband Herzkranke Kinder e.V.
Main goals:
Support for families with CHD Patients:
· Exchange of information: self-help-groups, professional helpers (clinics) and rehabilitation
· Research of CHD
· FOR Family Orientated Rehabilitation
· Sports-camps e.g. horse-back-riding-weeks, sailing camps
· psycho-social and legal advice
· raise public awareness for CHD chronically ill children
· Organisation of meetings and symposia at the „day of Congenital heart disease“ 5th May each year
· Integration of CHD-children and adults in our society
Contact:
Bundesverband Herzkranke Kinder e.V.
Mrs. Hermine Nock
Kasinostr. 66
52066 Aachen
www.bvhk.de

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Phone: +49- (0)241-91 23 32

GREAT BRITAIN
Name: Children`s Heart Federation
Numbers of member families: Children's Heart Federation (CHF) is the leading charity in the UK and umbrella body for voluntary organisations working to meet the needs of all children and young people affected by congenital and acquired heart condition.
Main goals: To support the parents and carers of children and young people with congenital heart disease (CHD) by:
• Raising and maintaining awareness about congenital and acquired heart conditions.
• Bringing about permanent improvements in the social and medical care of children with heart conditions and their families.
• Providing advice, information and practical support according to the needs of our stakeholders.
• Preparing young people with CHD for life after family support, so they can live independent lives and make informed decisions about their future well-being.
• Working in partnership with the Education, Healthcare and Social Care sectors as well as other charities to ensure that congenital and acquired heart conditions are fully understood and the needs of children and young people with heart conditions and their families are met.
• Supporting our member groups and helping them to grow and develop.
• Helping children and young people with heart conditions and their families to meet and spend time with other people in the same position as themselves.
CHF is dedicated to seeing these children and young people and their families fully supported and included in their community.
Contact:
Children`s Heart Federation
Mrs. Anne Keatley-Clarke
2-4 Great Eastern Street, London EC2A 3NW
Great Britain
www.chfed.org.uk

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Phone: +44 (0)20 7422 0630

GREECE
Name: Greek Association for the Protection and Suppurt of Children suffering from Congenital Heart Disease «Child’s Heart»
Number of member families: 1500
Main goals:
· improvement of the existing infrastructure of our country
· Improvement of treatment of our children
· financial support of our members and their families
Contact:
Mrs. Athena Koltsidopoulos
104 Aiolou Str.
10564 Athens
Greece
www.kardiapaidiou.gr

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Phone: +30-2103218488 or +30-2103253876

HUNGARY
Contact: Mr. Ferenc Iker
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ICELAND
Name: Children’s Heart Foundation in Iceland Neistinn
Members: 320
Main goals:
Support for the parents of children with heart disease:
- providing information
- Financial support
- inform families about their rights
- Arrangement of meetings for parents and children
Contact:
Mrs. Gudrun B. Franzdottir
Sidumuli 6
108. RVK
Iceland
www.neistinn.is

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IRELAND
Name: Heart Children Ireland
Members: 805
Main goals:
· support parents and families of children with CHD
Contact: Margaret Rogers CEO
www.heartbeatni.org.uk, www.heartchildren.ie
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ITALY
Name: AICCA (Associazione Italiana dei Cardiopatici Congeniti Adulti) Italian GUCH Association
Main goals:
· To develop whatever activity is necessary or desirable to improve the quality
of life of adults who are born with congenital heart disease
and their families. · To create a national support network.
Contact:
Edward Callus and Emilia Quadri
Via Pascoli, 37
20097 San Donato Milanese, MI
Italy
www.aicca.it

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Phone: +39 02 5277 4677

ITALY
Name: Kinderherz. Verein für herzkranke Kinder (deutsch)
Cuore di bimbo. Associazione per bambini con malattie cardiache (italienisch)
Our organization supports families with CHD Patients living in South Tyrol (Südtirol).
Members: 100 members
Main goals:
· Support for families with CHD Patients
· Exchange of information
· Raise public awareness for CHD chronically ill children
· Organisation of meetings and symposia at the „day of Congenital heart disease“ 5th
May each year
· Assure children and their families with psychological, social and health support
· Integration of CHD-children and adults in our society
Contact:
Dr. Martina Ladurner
Mitterplars 54
I-39022 Algund
Italy
www.kinderherz.it

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Mobile: +39 366-3636030

LITHUANIA
Name: Vaiko Širdies Asociacija
Members: 50 members
Main goals:
- Support for parents of children with heart disease:
· Inform parents & concentrate them
· ECHDO & Corience-networking
· Organisation of summer camps
· Integration of CHD children in society
· Install children`s rooms in hospitals
Contact:
Mrs. Daiva Jonauskine, Kostas Jonauskas
Minijos g. 1 Kartenos mstl. Kretingos r.
LT-97340
Lietuva

www.vaikosirdis.lt

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Phone: +370 60977393

LUXEMBOURG
Name: Lux Cordis asbl
Main goals:
·Exchange of information and experiences with all members of ECHDO
·Information for families about cardiac malformations, treatments,
medical centres and all problems of cardiac children
·Awareness campaigns for CHD: publications, information material and website
Contact:
Malgorzata Pawlowska
24, Wakelter
6928 Oberanven
Luxemburg
www.luxcordis.org

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Phone: 0352-621-656-944

NETHERLANDS
Name: Patiëntenvereniging Aangeboren Hartafwijkingen (PAH)
Dutch Patient & Parent Organisation for CHD
Members: 1050
Main goals:
Give support concerning congenital heart disease by:
· organising patient contacts (children, parents, adults, partners)
· providing accurate information (website, Newsletter, Member magazine ‘Sinus’)
· developing good quality of care (physically and psycho-social)
Contact:
Patiëntenvereniging Aangeboren Hartafwijkingen (PAH)
Mrs.Bernadette Huisman
Postbus 1671
3600 BR Maarssen
Netherlands
www.aangeborenhartafwijking.nl

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Phone: +31 880063600

NORTHERN IRELAND
Name: Heartbeat Northern Ireland
Members: 150-200
Main goals:
· support families
· support research into congenital heart disease
· support Clark Clinic, Northern ireland’s Paediatric Cardiac Centre
Contact:
Mr. Irwyn McKibbin
www.heartbeatni.org.uk

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NORWAY
Name: Foreningen for hjertesyke barn FFHB,
Norwegian association for children with congenital heart disease
Members: 4000
Main goals:
· interests of children with heart disease, their families
· families who have lost their child with heart disorder
· Main tasks are: habilitation, GUCH, physical activity, lobbying, information, research.
Contact:
FFHB
Mrs. Marte Jystad
Postboks 4535 Nydalen
0404 Oslo
Norway
www.ffhb.no

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Phone: +47-22799450 or +47-92288219

POLAND
Name : Fundusz Serce Dziecka” The Dina Radziwillowa “Child`s Heart” Foundation, Poland
Number of member families: 200 persons direct contact and 600 persons by Internet
Main goals:
1. Support for the parents of children with heart disease:
- providing information;
- financial support;
- direct personal contact and help;
- psychological support;
- arrangement of meetings for parents and children
- arrangement of basic rescue training for parents and custodians of children
- edition and publication of the book “A child with a heart defect – a guide for parents”;
- distribution of information materials;
2. Support for children with heart disease:
- visits in medical centers and events for hospitalized children;
- delivery to medical institutions of items necessary for personal care;
- distribution among children of packages with sweets and souvenirs;
- renting of Choagu-checks apparats; pulse oximeters and other small equipment;
- cooperation with the ‘Dr Clown’ Foundation, which organizes performances for hospitalized children.
3. Awareness campaigns:
- edition and publication of the book “A child with a heart defect – a guide for parents”
- distribution of information materials
- creation of website www.sercedziecka.org.pl and forumsercedziecka
- awareness campaigns on the occasion of World Heart Day (participation in mass events in certain Polish cities) and the congenital Heart Defect Awareness Day;
- cooperation with mass media;
- publication of a colouring book for children about hospital stays and surgery;
- closer contact with doctors and medical staff of cardiology and cardiac surgery divisions in various hospitals.
Contact:
Fundacja Serce Dziecka
Hanna Milczarek
Relaksowa 58 str.
02-796 Warsaw
Poland
www.sercedziecka.org.pl

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Phone: 0048 / 601-228-073

POLAND
Name: Corinfantis
Contact:
Michal Pytys
www.www.corinfantis.org



ROMANIA
Name:My child – My heart” Association
Members: 20-25 families
Main goals:
- to develop national and international partnerships with both private and public institutions in order to increase life expectation and the quality of life for children with congenital heart diseases and their families
- to develop complex rehabilitation services for children with congenital heart diseases and their families
- to promote the rights of children with congenital heart diseases
Contact:
Sorin Gradinaru
Silvestru street 36
Iasi town
Romania
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Phone: +40-730800314
Fax: +40-332816211
Name:PROTCARD (Fundatio Pentru Protectia Adultilor Cu Boli Cardiace Congenitale)
Adult Congenital Heart Foundation
Members: 45
Main goals:
· Provide comprehensive care and information to adult patients
with congenital heart diseases, their families, friends and carers
· Open regional centres specialised in providing health and legal advice
for adults with congenital heart diseases
· Support a national register for an adequate identification
of the adults with congenital heart diseases
· Improve public awareness of congenital-heart issues
· Facilitate communication between patients and health-care providers
Contact:
Oana Savu,
Mircea Coman,
Vladimir Stanescu (Admin. Secretary)
No. 17 Randunelelor Street
Sector 3
Romania
www.protcard.org

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Phone: +40 21 3114938

SLOVENIA
Name: Društvo Srčnih Otrok
Members: 30 families
Main goals:
· exchanging information among members / parents
· support for families with CHD
· organizing lectures regarding CHD, novelties in cardiac medicine, risk of specific diseases such as endocarditis, RSV e.g.
· cooperation with doctors and other medical staff in Pediatric clinik and University Medical Centre in Ljubljana
· publishing informative brochures about available literature of CHD in Slovenia
· financial support for parents accommodation in Ljubljana during their childs' hospitalization
Contact:
Mrs. Maja Svetina
(president)
Britof 128
4000 Kranj
Slovenia
www.srcki.si

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SPAIN
Name: Fundacion Menudos Corazones, Menudos Corazones Foundation
Main goals:
· Perform all possible actions to improve the quality of life of patients with CHD and their families
· Inform and guide interested persons, e.g. parents and legal guardians of children and adolescents with heart disease, regarding the medical and social aspects of the disease, in order to give them a better understanding of the exact dimensions of the problem involved
· Help affected families with all their needs, particularly if the are obliged to move to a different city to obtain the required treatment for the children (free housing, creation of mutual help groups)
· Give children and young people with heart disease the necessary support to guaranty the total normalisation of their lives
· Make the general population more aware of the problem of congenital heart disease, providing information regarding the incidence of these diseases and their possible therapeutic solutions, and of their multiple social and legal repercussions
· Support research and study into heart disease, its causes, treatment and prevention in childhood and youth, in addition to its social and economic repercussions
· Support communication between different hospitals involved in the treatment of congenital heart disease
- Work towards ensuring that the European Charter for Children in Hospital becomes and effective reality
Contact:
Menudos Corazones Foundation
Mrs. Maria Escudero
C/Valdesangil
19-4° IZDA
28039 Madrid
Spain
www.menudoscorazones.org

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Phone: +34 -91 373 67 46 or +34 -91 386 61 22


SPAIN, Catalonia
Name: AICC (Association for Help to those Affected by Congenital Heart Problems in Catalonia)
Main goals:
·Support service to children, teenagers and youngsters with congenital cardiopathies
·Psycho-social attention service and of accompaniment to families with heart
·Service: advice and attention to professionals
·Information and advice service for centres of early intervention and
stimulation and professionals who intervene from early childhood
·Information and advice service in educational centres
Contact:
Yolanda Scott
www.aacic.org

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Phone: + 93 458 66 53

SWEDEN
Name: Hjärtebarnsföreningen
Members: 1800 families / 5800 members
Main goals:
· Support families
· Pass information to families and society
· Lobby for a good life for families with children effected of CHD
Contact:
Hjärtebarnsföreningen
Mr. Peter Nordqvist
Box 41
450 71 Fjällbacka
Sweden
www.hjartebarn.org or www.hjartebarnsfonden.org
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Phone: +46-(o)8442-4650
Phone: +46-(0)525 325 41

GUCH UK
Name: Grown up Congenital Heart Patients Association (GUCH PA)
Members: 2450
Main goals:
- Fight for right of patients, combating the discrimination that prevents them from enjoying equal rights in the workplace and entitlements to goods and services
- Empower patients to reach their goals and manage their heart conditions by giving them information about their rights to appropriate treatment and the knowledge to be able to make decisions about their own future and their own healthcare
- Help patients to understand and take advantage of the opportunities available to them
- We provide:
1. A free phone helpline offering advice and support for those living with heart conditions. Information given to patients has included how to ensure your employer makes reasonable adjustments for you at work, where to find specialists insurers, where to find specialists centres for GUCH Patients and all manner of information to empower and support them
2. Conferences and workshops on topics such as dealing with fears and phobias and healthy /safe sex including specialist information for LGBT groups
3. A free welfare benefits service, helping patients to secure their entitlements to benefits
4. A free national magazine that includes features on how patients can support each other advances in GUCH medicine, access to public transport and how to live healthily. A series of articles entitled “knowledge is power” advices on debt management, personal safety etc.
5. Weekends away where patients can meet others with similar conditions and share ideas and strategies to help each other live full and happy lives
6. A self support network through the message board on our website www.guch.org.uk
Contact:
Paul Willgoss
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www.guch.org.uk

Phone: +44-1473 252 007

JEMAH (German Guch)
Name: Bundesvereinigung JEMAH e.V.
Members: 350
Main goals: To improve the care and treatment of Grown-ups with a congenital heart disease in Germany
Contact:
Bundesvereinigung JEMAH e.V.
Geschäftsstelle
c/o Heike Appold
Bergstr. 16
97320 Mainstockheim
www.JEMAH.de

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Phone: +49-(0)9321-268905

ROMANIA (GUCH)
Name: Fundatia Pentru Protectia Adultilor Cu Boli Cardiace Congenitale (Addult Congenital Heart Foundation)
Members: 45
Main goals:
· providing comprehensive care and information to adult patients
with congenital heart diseases,
their families, friends and care providers
· opening of regional centres specialized in health and legal consultancy
dedicated to adults with congenital heart diseases
· supporting a national register for an adequate identification of the adults
with congenital heart diseases
· sensitizing public opinion to congenital heart issues
· facilitating communication between patients and health care providers
Contact: Oana Savu (secretary) or Ioan Mircea Coman (president)
No. 17th Randunelelor Str., Sector 3
Bucharest
Romania
www.protcard.org

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Phone/Fax: +40 -21 3114938


Contact-Adress of ECHDO:

Bundesverband Herzkranke Kinder e.V. (BVHK)
Hermine Nock
Kasinostr.66
D- 52066 Aachen (Germany)
Phone: +49 (0) 241 - 912332
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www.bvhk.de