ECHDO: network for self-help-groups for congenital heart disease

European self-help-groups for congenital heart disease have united themselves under the umbrella of ECHDO (European Congenital Heart Disease Organisation).

This new umbrella organisation has been formed to look after the interests of children and adults with congenital heart disease (CDH). Member organisations will:
• Share knowledge and experiences
• Exchange examples of best practice
• Work together to improve care and treatment
(Download our information flyer here (PDF-file))
We support parents/patient-organisations within Europe. We are trying to find such groups in:
• Malta
• Slovakia
• Former Yugoslawia
Please contact us:
Hermine Nock, Tel. 0049-241-912 332, Email: hermine.nock@bvhk.de

Our next General Assembly will take place 30.09.-02.10.2010 in London
(Download our pre-program meeting flyer here (PDF-file))

19.-20.06.09 in Barcelona with 70 representatives from 22 countries

07.-08.11.08 in Berlin/Germany
(Download our information flyer and the registration form and Press release ( PDF-files)

1st meeting

What is ECHDO:

ECHDO is the European congenital heart disease organisation for families affected by CHD

Our Vision:
To share information and experiences in order to improve the care and treatment for all people affected by CHD everywhere in Europe.

Goals of ECHDO:

We aspire to:
· Exchange information and experience lobby together.
· Liaise with other European networks.
· Provide up-to-date information about CHD to all European patients and their families.
· Lobby for European standards on medical and psychosocial care of CHD patients.
· Ensure safety of drugs for all European patients with CHD.
· Improve the circumstances of GUCH (Grown ups with congenital heart disease) in Europe.
· Provide information about research studies within Europe and share results and experiences.

Corience-information booth at AEPC Meeting May 21-24, 2008 in Venice	Presentation of ECHDO and corience at the AEPC meeting

Presentation of ECHDO and Corience at the World Summit on Pediatric and Congenital Heart Surgery at Montreal, Canada June 19- 21, 2008

Members of ECHDO:

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
Email: pediheart@cytanet.com.cy
Phone: +2231 51 46 96

DENMARK
Name: Hjerteforeningens borneklub
Contact:
Hjerteforeningens borneklub
Helle Meinhardt
www.hjerteforeningen.dk
Email: naestformand@hjertebarn.dk

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
Email: river.tomera@gmail.com
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.www.sydanlapsetjaaikuiset.fi
Email: katja.laine@sydanlapsetjaaikuiset.fi
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
Email: masseronmarie@orange.fr

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
Email: bvhk-aachen@t-online.de
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.www.chfed.org.uk
Email: info@chfed.org.uk
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
Email: kardiap@yahoo.gr
Phone: +30-2103218488 or +30-2103253876

HUNGARY
Contact: Mr. Ferenc Iker
Email: iker.ferenc@axelero.hu

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
Email: gudrun@hjartaheill.is or neistinn@neistinn.is

IRELAND
Name: Heart Children Ireland
Members: 1000
Main goals:
· Support parents and families of children with congenital heart diseases.
· To support our young adults transferring to adult facilities.
· Support for bereaved families.
Contact: Margaret Rogers CEO
The Carmichael Centre
North Brunswick Street
Dublin 7
Ireland
www.heartbeatni.org.uk, www.heartchildren.ie
Email: heartchildren@eircom.net
rogersmcb@eircom.net
Phone: +353-1-8740990

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
Email: edward.callus@gmail.com or emilia.quadri@grupposandonato.it
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
Email: info@kinderherz.it
Mobile: +39 366-3636030

LITHUANIA
Name: Vaiko Širdies Asociacija
Members: 20 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
Lithuania
www.vaikosirdis.lt/
Email: daiva@mazojisirdele.lt or kostas@vaikosirdis.lt
Phone: +37 445 471 65

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
Email: Info@luxcordis.org
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
Email: info@aangeborenhartafwijking.nl
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
Email: mckibbin@btinternet.com

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
Email: ffhb@ffhb.no or marte@ffhb.no
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
Email: fundacja@sercedziecka.org.pl
Phone: 0048 / 601-228-073

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
Email: respectmedia@gmail.com or matei.gradinaru@gmail.com
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
Email: contact@protcard.org or protcard@gmail.com
Phone: +40 21 3114938

SLOVENIA
Name: Drustvo za zdravje srca in ozilja Slovenije / Section for congenital heart disease
Members: 10.000
Main goals:
· Publishing informative brochures on CHD.
· Organizing lectures regarding CHD, and spreading
novelties in cardiac medicine.
· Exchanging information among members, parents
support for families with CHD.
· Cooperation with doctors and other medical staff
in Paediatric clinic and other medical institutions.
· Continuous presence of CHD topics in organization's magazine "Za srce".
· Raise awareness of Corience among all interested public.
Contact:
Mr. Franc Zalar
Drustvo za zdravje srca in ozilja Slovenije
Dunajska cesta 65
1000 LJUBLJANA
Slovenia
www.zasrce.si
Email: drustvo.zasrce@siol.net

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/ Emerenciana Zurilla nº 35-B.
28039 Madrid
Spain
www.menudoscorazones.org
Email: informacion@menudoscorazones.org
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)
Members: 1449 families
Main goals:
· To assist, in as wide a scope as possible, to those affected by congenital cardiopathies,
their families and the professionals who deal with them throughout the different evolutionary stages.
· To foster, promote and enhance all projects and services to enable the integration of those affected of
congenital cardiopathies in different areas of society and life in general (educational, work, leisure...).
· To distribute information and generally spread and share knowledge about congenital cardiopathies
and their consequences so as to develop and further promote public awareness on the issue.
· Fostering and promoting initiatives to research congenital cardiopathies.
· Forming and fostering voluntary workers as a form of collaboration
· Closely monitoring to ensure the effective application of the rights of children
who are admitted into hospitals (as reflected in the European Letter of the Rights of Children in Hospital).
Activities:
· Support service to to those Affected by congenital cardiopathies
· Online groups and meeting spaces to those Affectedwho use this means to get in touch with other peers.
· Individual study of the physical and functional potential to those Affected by
Congenital Heart Problems and degree of adaptation to the environment.
· Psycho-social attention service and of accompaniment to families withchildrens heart problems.
· Service proferring advice and attention to professionals.
· Voluntary action in order to cover the specific needs of people with cardiopathy and their families.
· Edition of books to support and foster awareness among children and youngsters.
· Information and public awareness services of congenital cardiopathies.
· Fostering and promoting initiatives of research related to congenital cardiopathies.
Contact:
Rosa Armengol Aragonès
AACIC
Plaza Sagrada Familia 5, 2º A
Barcelona 08013
España
www.aacic.org
Email: info@aacic.org
Phone: + 93 458 66 53
Barcelone

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
Email: peter.nordqvist@hjartebarn.org
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
Email: paul.willgoss@btinternet.com
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
Email: info@jemah.de
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
Email: contact@protcard.org
Phone/Fax: +40 -21 3114938

Contact-Adress of ECHDO:

Hartekinderen vzw
Mr. Peter V/d Broeck
Elzenlaan 20
B- 2390 Malle Belgium
Email: info@hartekinderen.be
www.hartekinderen.be

Meetings

• Meeting of ECHDO and Corience 19.-20.06.09 in Barcelona:
Download our minutes ( PDF-files):
Minutes ECHDO-Corience 20.06.2009
Minutes ECHDO-rare-together 19.06.09
Minutes Corience workshop 19.06.09

• 22.-26. June 2009 Cairns, Australia:
PCCS2009: 5th world congress of paediatric cardiology and cardiac surgery: www.pccs2009.com

• 7.-8. November 2008 Berlin, Germany :
First joint meeting of ECHDO and Corience on Friday, November 7 and Saturday, 8, 2008, in Berlin at Hotel Aquino. Ask for programme and financial/organisational details: bvhk-aachen@t-online.de

• 13.-19. July 2008 Tampere, Finland :
Young Hearts - III Conference for Adults with Congenital Heart Defects 2008
www.echg.net More information about the conference for download (pdf)

• 19-21. June 2008 Montreal, Canada:
World Summit on Pediatric and Congenital Heart Surgery. www.wspchs.org

• 21.-24. May 2008 Venice, Italy:
AEPC - Annual meeting (in cooperation with surgeons) ECHDO information booth and “Corience” presentation : www.aepcmeeting2008.com
Email: aepc2008@aimgroup.it

Friday, May 23, 2008 Scientific Session of the AEPC working group “Psycho-Social Care”· The struggle for equality, Chairs: Antonio Corno (Liverpool, UK), Ulrike Salzer-Muhar (Vienna, AT)

· Are children with CHD given an equal opportunity in the real world?
Hemine Nock (German Parents Umbrella Organization, Aachen, DE)
· Ethical dilemmas in the treatment of children with CHD and major comorbidity
Frank Casey (Belfast, IE)
· “Lost in translation”. Providing care in a multicultural society
Ulrike Salzer-Muhar (Vienna, AT)
· Humanitarian projects: responsibility, difficulties and potential benefits
Aldo R Castaneda (Guatemala City, GT)