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)

3rd joint Meeting of ECHDO and Corience

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

2nd ECHDO Meeting

The second ECHDO-meeting took place on the occasion of the meeting of the psycho-social working group of the AEPC (Association for European Paediatric Cardiology) in Bruges/Belgium from 27.-29th February 2007. You can ask for the meeting minutes: bvhk-aachen@t-online.de

GUCH-Grown up with Congenital Heart disease, Presentations about Guch (Peter Eriksson+GUCH-Germany):
Download "Task Force for adults with congenital heart defect" and "Resource allocation for the GUCH-patients, why is it necessary?" (PDF-files).




1st meeting

In Berlin on 23.-24. March 2007, organised by the German Bundesverband Herzkranke Kinder e.V. and supported by German Kompetenznetz Angeborene Herzfehler.

Eva-Luise Köhler, First Lady and patroness of ACHSE (Alliance of chronically rare diseases) sent words of welcome, saying that she esteemed the idea of a European network as a very important one. She also asked ECHDO to help solving existing problems especially in the research of CHD. The patroness of the Kompetenznetz Angeborene Herzfehler, Friede Springer, congratulated the representatives on their European idea. Dr. Gabriele Hausdorf from the German ministry of research and education is also supporting the network and said she was convinced that it should be used as a model for other chronic congenital disease organisations. Dr. András Szatmári, PhD, Hungary, President of the Association for European Paediatric Cardiology (AEPC) said he was looking forward to achieving standardised treatment and education of doctors within Europe with the support of patients groups. Lastly Prof. Hans Heiner Kramer, Kiel, president of the German Association of Paediatric Cardiology, underlined the importance of the united self-help-organisations as a pressure group in the struggle for improved treatment of CHD.

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:

AUSTRIA
Name: Herzkinder Österreich
Number of member families: 150
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: Mrs. Petra Sitter
www.herzkinder.at
E-mail: m.altendorfer@herzkinder.at or p.sitter@herzkinder.at
Telephone: +43-7942-74979
Managing committee:
chairwoman: Michaela Altendorfer
vice chairwoman:  Petra Sitter
secretary: Michaela Friesen-Zrost
treasurer: Petra Sitter

BELGIUM
Name: Hartekinderen vzw. Mr. Peter V/d Broeck
Number of member families: 502
Contact:
Mr. Peter V/d Broeck
K.Elisabeth Laan 23
B-8500 Kortryk
www.hartekinderen.be
E-mail: info@hartekinderen.be

BULGARIA
Name : Association „Child’s heart“
Number of member families: about 80, target group is about 4000 people
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
3 Lakov Kraikov Str.
Sofia 1609
www.lex.bg/members/ads
E-mail: as_childs_heart@yahoo.com
Telephone: + 359 2 953 28 66

CYPRUS

Σύνδεσμος Γονέων και Φίλων καρδιοπαθών Παιδιών

Γράμμου 11

Πολ. Καρυάτιδες, Διαμ. 15

2006 Στρόβολος

Κύπρος / Cyprus

Syndesmos Goneon kai Filon kadiopathon Paidion
Τ.Θ. 28671
2081 Akropolis
Cyprus
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
· Fundraising events
· Cooperation with Ministry of Health in order to protect CHD patient’s rights
Contact: Mrs. Stella Eleftheriadou (President)
www.pediheart.org.cy
E-mail: pediheart@cytanet.com.cy
Telephone: +2231 51 96

ESTONIA
Name: MTÜ Südamelaste Tugiühing
Number of families: 50
Main goals: join and support families having children with congenital heart desease.
Contact: Mr. River Tomera
www.sydamelaps.ee
E-mail: 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 verisitale 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: Mrs. Katja Laine
Oltermannintie 8
00620 Helsinki, Finland
www.sydanlapsetja-aikuiset.fi
E-mail: katja.laine@sydanlapsetjaaikuiset.fi
Telephone: +358 (0)9 7527 5275

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“ 5. May each year 
· Integration of CHD-children and adults in our society
Contact: Mrs. Hermine Nock
Kasinostr. 66
52066 Aachen
www.bvhk.de
E-mail: bvhk-aachen@t-online.de
Telephone: +49- (0)241-91 23 32

GREAT BRITAIN
Name: childrens heart federation
Contact: Mrs. Anne Keatley-Clarke
www.childrens-heart-fed.org.uk

GREECE
Name: Greek Association for the Protection and Suppurt of Children suffering from Congenital Heart Disease «Child’s Heart»
Number of member families: 1100
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 Koltsidopouios
104 Aiclou Str.
10564 Athens
www.kardiapaidiou.gr
E-mail: kardiap@yahoo.gr
Telephone: +30-2103218488 or +30-2103253876

HUNGARY
Contact: Mr. Ferenc Iker,
E-mail: iker.ferenc@axelero.hu

ICELAND
Name: Children’s Heart Foundation in Iceland Neistinn
Members: 300
Main goals:
· pass information to families
· inform families about their rights
· help and support families, also financially
· We have few events, meetings and always one lecture over the year the participation are usually very good.
Contact: Mrs. Gudrun B. Franzdottir
Sidumuli 6
108. RVK
www.neistinn.is
E-mail: gudrun@hjartaheill.is or neistinn@neistinn.is

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
E-mail: heartchildren@eircom.net

ITALY
Name: Kinderherz-Verein
Contact: Mrs.Brigitte Novak
c/o Südtiroler Landtag
Crispistr. 6
39100 Bozen
www.kinderherz.it
Telephone: +39-0471-946-275

NETHERLANDS
Name: Patiëntenvereniging Aangeboren Hartafwijkingen (PAH)
Dutch Patient & Parent Organisation for CHD
Members: 950
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: Mrs.Bernadette Huisman
Patiëntenvereniging Aangeboren Hartafwijkingen (PAH)
Address: P.O. Box 132
3720 AC Bilthoven
www.aangeborenhartafwijking.nl
E-mail:info.pah@shhv.nl

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

NORWAY
Name: Foreningen for hjertesyke barn FFHB,
The Assosiation of 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: Mrs. Marte Jystad
www.ffhb.no
E-mail: ffhb@ffhb.no or marte@ffhb.no
Telephone: +47-22799450 or +47-92288219

POLAND
Name : “Fundusz Serce Dziecka” Child Heart Fund at Dina Radziwittowa Foundation
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:
- creation of website www.sercedziecka.org.pl and forum.sercedziecka
- 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:
www.sercedziecka.org.pl
58 Relaksowa str. 02-796 Warsaw
E-Mail: fundusz@sercedziecka.org.pl
Telephone: 0048 / 601-228-073

ROMANIA
Name: Parents Association of children with CHD (legal foundation in course to obtain)
Contact: Sorin Gradinaru
Silvestru street 36
Iasi town, Romania
E-mail: respectmedia@gmail.com or matei.gradinaru@gmail.com
Telephone 0040-730800314
Fax 0040-332816211


ROMANIA
Name: Fundatio 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 centers 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
 E-mail: contact@protcard.org
Telephone/Fax: +40 -21 3114938

SPAIN
 Name: Fundacion Menudos Corazones,  Menudos Corazones Foundation
Main goals:
· Perform all possible actins to improve quality of life of patients an their families
· Inform and guide interested persons, legial guardians
· Help affected families with all their needs
· Give support to get normalisation of their lives
· Make population more aware of the problems
· Support research and study into heart disease
· Support communication between hospitals
Contact: Mrs. Maria Escudero
C/Valdesangil
19-4 IZDA
28039 Madrid
www.menudoscorazones.org
E-mail: informacion@menudoscorazones.org
Telephone: +34 -91 373 67 46 or +34-91 386 61 22

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: Mr. Peter Nordqvist
Box 9087
10272 Stockholm
www.hjartebarn.org
E-mail: peter.nordqvist@hjartebarn.org
Telephone: +46-8442-4650

GUCH UK
Name: Grown up Congenital Heart Patients Association (GUCH PA)
Members: 22450
Main goals:
· Fight for right of patients and against discrimination
· Passing information about rights and appropriate treatment
· Help patients to take advantage of their opportunities
Contact: Mrs. Claire Wilby
www.guch.org.uk
Telephone: +44-1473 252 007

JEMAH (German Guch)
 Name: Bundesvereinigung JEMAH e.V.
Members: 261
Contact: Mr. Torben Geier
JEMAH e.V.
Gerrickstr. 21
47137 Duisburg
www.JEMAH.de
E-mail: info@jemah.de
Telephone: +49-203-451 3061

Contact-Adress of ECHDO:

Bundesverband Herzkranke Kinder e.V. (BVHK)
Hermine Nock
Kasinostr.66
D- 52066 Aachen (Germany)
Tel. +49 (0) 241 - 912332
e-mail: bvhk-aachen@t-online.de
 www.bvhk.de

Meetings

•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
E-Mail: 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)