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International Congenital Heart
Organization Directory
Supporting young people and adults born with a
heart condition
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DISCLAIMER
To the best of our knowledge the information contained within this directory is correct. The information has been collated and verified with the assistance of representatives from the organisations and groups contained within; The Somerville Foundation cannot be held responsible for any inaccuracies. If you have suggestions or would like to be included in a future edition of the directory, please contact [email protected]
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Glossary
Acronym Actual
ACHD Adult Congenital Heart Disease
AICCA Associazione Italiana dei Cardiopatici Congeniti Adulti
CEO Chief Executive Officer
C/O Care Of
CCHA Canadian Congenital Heart Alliance
CHD Congenital Heart Disease
ECHG European Congenital Heart Group
GUCH Grown Up Congenital Heart
HCI Health Care Informed
HMRC Her Majesties Revenue & Customs
NI Northern Ireland
N/A Not Applicable
TBC To Be Confirmed
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CONTENTS AUSTRALIA .......................................................................................................................................4
BELGIUM ...........................................................................................................................................5
CANADA.............................................................................................................................................6
DENMARK .........................................................................................................................................7
EUROPE ...........................................................................................................................................8-9
FINLAND ..........................................................................................................................................10
GERMANY ....................................................................................................................................... 11
GREECE ............................................................................................................................................12
ITALY ................................................................................................................................................13
IRELAND ..........................................................................................................................................14
MALTA ..............................................................................................................................................15
NETHERLANDS...............................................................................................................................16
NEW ZEALAND...............................................................................................................................17
NORTHERN IRELAND...............................................................................................................18-19
NORWAY...........................................................................................................................................20
POLAND ...........................................................................................................................................21
RUSSIA .............................................................................................................................................22
SCOTLAND ......................................................................................................................................23
SWITZERLAND ...............................................................................................................................24
UNITED KINGDOM ...................................................................................................................25-26
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AUSTRALIA
Organization Details
Name of organisation
Heart Kids Australia
Official Address Heart Kids Australia PO Box 46 Kogarah NSW 1485
Country(ies) covered
Australia
Main organisation contact
Jeanette Manson: E-Mail:[email protected]
Website http://www.heartkids.org.au
Events Page http://www.heartkids.org.au/index.php/state/news_item/55/
No. of volunteers Not known at present time
Principal contact for international issues
Linda Clark E-Mail: [email protected]
Principal contact for other issues
Alan Bowden (CEO) E-mail: [email protected]
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BELGIUM
Organization Details
Name of organisation Hartekinderen
Official Address FORTIS 035-4805851-27 Hartekinderen vzw Elzenstraat 20 2390 Malle.
Country(ies) covered Belgium
Official status: Registered
Main organisation contact
E-Mail: [email protected]
Website http://www.youngheartsbelgium.be/
No. of members / people on mailing list
TBC
No. of paid staff TBC
Principal contact for international issues
TBC
Principal contact for other issues
TBC
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CANADA
Organization Details
Name of organisation Canadian Congenital Heart Alliance (CCHA)
Official Address C4-233 Cross Avenue, P.O. Box233, Oakville, ON L6J 2W9 Canada
Country(ies) covered Canada
Official status: CCHA is a registered charity in Canada. Registration number: 832594329RR0001
Main organisation contact
E-Mail: [email protected]
Website www.cchaforlife.org
No. of members / people on mailing list
355
No. of paid staff 0
No. of volunteers Approx. 60
Principal contact for international issues
Shelagh Ross, CCHA president: [email protected]
Principal contact for other issues
Shelagh Ross, CCHA president: [email protected]
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DENMARK
Organization Details
Name of organisation Hjerteforeningen GUCH
Official Address Hjerteforeningen, Hauser Plads 10, 1127, Kobenhavn K, Denmark
Country(ies) covered Denmark
Official status: Part of a parent organisation and a main heart organisation
Main organisation contact
Kirsten V Hansen T:+45 388 115 67
Website http://www.guch.dk
Events page TBC
No. of members / people on mailing list
150 (50 members on the mailing list)
No. of volunteers 5
Principal contact for international issues
Kirsten V Hansen: E-Mail: [email protected] Lene Schulz: E-Mail: [email protected]
Principal contact for other issues
Kirsten V Hansen: E-Mail: [email protected]
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EUROPE
Organization Details
Name of organisation European Congenital Heart Group (ECHG)
Official Address The ECHG is a working group and has no Official Address
Country(ies) covered Europe
Official status: The ECHG is a voluntary organisation comprising of the national groups representing adults with ACHD
Main organisation contact
Paul Willgoss [email protected]
Website https://www.facebook.com/ECHGroup
No. of members / people on mailing list
TBC
No. of paid staff 0
Principal contact for international issues
Paul Willgoss [email protected]
Principal contact for other issues
Paul Willgoss [email protected]
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EUROPE
Organization Details
Name of organisation ECHDO – European Congenital Heart Disease Organisation
Official Address Grünauerstrasse 10, 4020 Linz, Austria
Country(ies) covered Europe
Official status: TBC
Main organisation contact
Michaela Friesen-Zrost (Coordinator)
E-Mail: [email protected] Tel: +4366488432802 (Mobile number)
Website http://echdo.org/
Events page https://www.facebook.com/pages/Echdo-European-Congenital-Heart-Disease-Organisation/268152066560428
No. of members / people on mailing list
41 (Association Members)
No. of paid staff 1
No. of volunteers 7
Principal contact for international issues
Michaela Friesen-Zrost (Coordinator)
E-Mail: [email protected]
Principal contact for other issues
Michaela Friesen-Zrost (Coordinator)
E-Mail: [email protected]
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FINLAND
Organization Details
Name of organisation The Finnish Association for Heart Children and Adults
Official Address Oltermannintie 8, 00620 Helsinki, Finland
Country(ies) covered Finland
Official status: Registered
Main organisation contact
E-Mail:[email protected]
Website www.sydanlapsetja-aikuiset.fi
Events page National: www.sydanlapsetja-aikuiset.fi/fin/mita/mita/muuta_toimintaa/?id=112 Regional: www.sydanlapsetja-aikuiset.fi/fin/mita/mita/aluetoimintaa/?id=10
No. of members / people on mailing list
2000
No. of paid staff 3
Principal contact for international issues
Katja Laine: E-Mail: [email protected]
Principal contact for other issues
Kaja Laine: E-Mail: [email protected]
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GERMANY
Organization Details
Name of organisation Jemah
Official Address c/o Heike Appold, 16 Bergstrasse 97 320, Mainstockheim
Country(ies) covered Germany
Official status: GUCH Group
Main organisation contact
Head Office: T: +49 (0)9321-268905 F: +49 (0)721-151388114 E-Mail: [email protected]
Website http://www.jemah.de/cms/
Events page http://www.jemah.de/cms/index.php?option=com_eventlist&Itemid=28
No of members / people on mailing list
300
No. of paid staff 0
No. of volunteers 40
Principal contact for international issues
E-Mail: [email protected]
Principal contact for other issues
E-Mail: [email protected]
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GREECE
Organization Details
Name of organisation Panhellenic Congenital Heart Disease Association
Official Address 8 Kassaveti str., Patisia, Athens
Country(ies) covered Greece
Official status: GUCH Group
Main organisation contact
E-Mail: [email protected]
No. of members / people on mailing list
200
No. of paid staff 1
No. of volunteers Unknown
Principal contact for international issues
Costas Hortis (chairman): E-Mail: [email protected]
Principal contact for other issues
Costas Hortis (chairman): E-Mail: [email protected]
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ITALY
Organization Details
Name of organisation Associazione Italiana dei Cardiopatici Congeniti Adulti
Official Address via G.Pascoli, 37 20097 San Donato Milanese (MI)
Country(ies) covered Italy
Main organisation contact
E-Mail: [email protected] Telefax: +390252774912 Giovanna Campioni: +3934746161128
Website www.aicca.it
No. of members / people on mailing list
TBC
No. of paid staff TBC
No. of volunteers TBC
Principal contact for international issues
Edward Callus Email: [email protected]
Principal contact for other issues
E-Mail: [email protected]
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IRELAND
Organization Details
Name of organisation Chairde mo Chroi
Official Address Heart Children Ireland, Carmichael House, 7 Bruinswick Street North, Dublin, Ireland
Country(ies) covered Ireland
Official status: Affilated with HCI – Registered Charity
Main organisation contact
Head Office: T: (00 353 1) 8740990 E-Mail: [email protected]
Website http://www.heartchildren.ie/
Events page http://www.heartchildren.ie/viewevents
No of members / people on mailing list
800
No. of paid staff 2
No. of volunteers 0
Principal contact for international issues
Margaret Rodgers: E-Mail: [email protected]
Principal contact for other issues
Unknown
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MALTA
Organization Details
Name of organisation Beating Hearts Malta
Official Address 5/5B Peralta Court St Julians Terrace, St Julians, Malta STJ 1062
Country(ies) covered Malta
Official status: Voluntary Organisation
Main organisation contact
Katrina Aquilina Tel: 00356 79468338 Email: [email protected]
Website Currently no active website
Events page https://www.facebook.com/BeatingHeartsMalta
No of members / people on mailing list
20 - 30 At present
No. of paid staff 0
No. of volunteers 5 Trustees on the board
Principal contact for international issues
Katrina Aquilina Tel: 00356 79468338 Email: [email protected]
Principal contact for other issues
Katrina Aquilina Tel: 00356 79468338 Email: [email protected]
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NETHERLANDS
Organization Details
Name of organisation
Netherlands Heart Foundation
Official Address Netherlands Heart Foundation Prinses Catharina Amaliastraat 10 2496 XD Den Haag
Country(ies) covered
Holland
Official status: National Foundation for all forms of heart disease.
Main organisation contact:
Head Office Phonenumber: + 31 70 - 315 55 55 Faxnumber: + 31 70 - 335 28 26
Website www.hartstichting.nl
Events page N/A
Principal contact for international issues
Peter Nieuwendijk
Egboet 42
1671 LK MEDEMBLIK
The Netherlands
Email: [email protected] Phone: +31 227-545916
Principal contact for other issues
N/A
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NEW ZEALAND
Organization Details
Name of organisation
@Heart ‘Supporting Heart Kids Through Life’
Official Address Postal Address PO Box 108-034 Symonds Street Auckland 1150 New Zealand
Country(ies) covered
New Zealand
Official status: Registered
Main organisation contact
Head Office: T: (+64) 09-377 9950 F:(+64) 09-377 9954 E-Mail: [email protected]
Website www.heartchildren.org.nz
Events page http://www.heartnz.org.nz/index.php/Get-Involved/get-involved.html
No. of paid staff 21 (Not all are full time)
Principal contact for international issues
Lorraine Warshaw: [email protected]
Principal contact for other issues
Lorraine Warshaw: [email protected]
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NORTHERN IRELAND
Organization Details
Name of organisation
Children’s Heartbeat Trust
Official Address C/O Clark Clinic, The Royal Belfast Hospital for Sick Children, 180 Falls Road, Belfast BT12 6BE
Country(ies) covered
Northern Ireland
Official status: Children's Heartbeat Trust is a charity as recognised by the Inland Revenue – No: XT21039
Main organisation contact
Head Office: T: +44 (0) 7584164815 E-Mail: [email protected]
Website www.childrensheartbeatrust.org
Events page http://www.childrensheartbeattrust.org/news-events/
No. of members / people on mailing list
1000
No. of paid staff 1
Principal contact for international issues
Sarah Quinlan: [email protected]
Principal contact for other issues
Sarah Quinlan: [email protected]
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NORTHERN IRELAND
Organization Details
Name of organisation
Heartbeat NI
Official Address 9 Turloughs Hill, Annalong, Co Down BT34 4XD
Country(ies) covered
Northern Ireland
Official status: Recognised as a charity by HMRC – No XR78474 (No Charity Commission NI)
Main organisation contact
Irwyn McKibbin Head Office: T: +44 (0) 7801 370 297 E-Mail: [email protected]
Website www.heartbeatni.com
Events page http://www.heartbeatni.com/news
No. of members / people on mailing list
Approx 500
No. of paid staff 0
No. of volunteers 15
Principal contact for international issues
Irwyn McKibbin: [email protected]
Principal contact for other issues
Irwyn McKibbin: [email protected]
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NORWAY
Organization Details
Name of organisation
Foreningen Voksne med Medfødt Hjertefeil
Official Address Øvre Vollgate 11, Oslo
Country(ies) covered
Norway
Main organisation contact
Marit Haugdahl : E-Mail:[email protected]
Website www.vmh.no
Events page http://www.vmh.no/index.php?option=com_content&view=article&id=54&Itemid=80
No. of members / people on mailing list
350
No. of paid staff 1
Principal contact for international issues
E-Mail: [email protected]
Principal contact for other issues
E-Mail: [email protected]
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POLAND
Organization Details
Name of organisation
“Childs Heart” Foundation
Official Address The Dina Radziwillowa “Child`s Heart” Foundation, Narbutta, 26/1 02-536 Warsaw
Country(ies) covered
Poland
Official status: Parents Organisation, Registered
Website www.sercedziecka.org.pl
No. of members / people on mailing list
40
No. of paid staff 5
No. of volunteers 10
Principal contact for international issues
J.Kacha: [email protected] Hanna Milczarek: [email protected]
Principal contact for other issues
J.Kacha: [email protected] Hanna Milczarek: [email protected]
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RUSSIA
Organization Details
Name of organisation
Arkangelsk Regional Organisation of GUCH
Official Address Russia, Arkangelsk, Kasatkinoi st., 5-1-108
Country(ies) covered
Russia
Main organisation contact
T:(+79) 00642974618 Julia: T:(+79) 00115512931
Website Main: www.guch.ru Forum: Forum.dearheart.ru
No of members / people on mailing list
30 on the mailing list
No. of paid staff 0
No. of volunteers All staff are Volunteers
Principal contact for international issues
E-Mail: [email protected]
Principal contact for other issues
E-Mail: [email protected] E-Mail: [email protected]
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SCOTLAND
Organization Details
Name of organisation
Bravehearts
Official Address 8 East Dean St, Mossend, Bellshill, ML4 1R6
Country(ies) covered
Scotland
Official status: Part of the Scottish Association for Children with Heart Disease which is a registered charity. Number: SC 035499
Main organisation contact
Gill Mitan: [email protected]
Website Main: www.youngheart.info
Events page http://www.youngheart.info/Eventspage.htm
No of members / people on mailing list
360
No. of paid staff 0
No. of volunteers 18
Principal contact for international issues
Gill Mitan E-Mail: [email protected]
Principal contact for other issues
John Fagen (SACHD Chairman): E-Mail: [email protected]
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SWITZERLAND
Organization Details
Name of organisation
Cuore Matto
Official Address Marktgasse 31, 3011 Bern, Switzerland
Country(ies) covered
Switzerland
Official status: Association under Swiss law
Main organisation contact
Head Office: T:(+41) 79 912 00 60 [email protected]
Website Main: http://www.cuorematto.ch
Events page www.cuorematto.ch/index.php?option=com_content&view=article&id=214&Itemid=8
No of members / people on mailing list
200 (160 with CHD)
No. of paid staff 0
No. of volunteers On the Board: 5 Others: 15
Principal contact for international issues
Monique Kauer E-Mail: [email protected] Noemi de Stoutz E-Mail: [email protected]
Principal contact for other issues
Monique Kauer E-Mail: [email protected] Noemi de Stoutz E-Mail: [email protected]
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UNITED KINGDOM
Organization Details
Name of organisation Children’s Heart Federation
Official Address 2 – 4 Great Eastern Street London EC2A 3NW
Country(ies) covered United Kingdom and Ireland
Official status: Registered Charity. Number: 1120557
Main organisation contact
Samantha Johnson [email protected] Tel: 0207 - 4220630
Website www.chfed.org.uk
Events page www.chfed.org.uk/events
No. of members / people on mailing list
Approx 10,000
No. of paid staff 7 full time 2 part time
No. of volunteers Approx 15
Principal contact for international issues
Anne Keatley-Clarke E-mail:[email protected] Tel: 0207 - 4220630
Principal contact for other issues
Samantha Johnson Operations manager E-mail: [email protected] Tel: 0207 - 4220630
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UNITED KINGDOM
Organization Details
Name of organisation The Somerville Foundation
Official Address The Somerville Foundation Saracen's House 25 St Margaret's Green Ipswich IP4 2BN
Country(ies) covered United Kingdom
Official status: The Somerville Foundation is a registered charity in England and Wales, registration number 1138088
Main organisation contact
T: +44(0)1473252007 E-Mail: [email protected]
Website www.thesf.org.uk
Events page www.thesf.org.uk/get-involved/attend-events.aspx
No. of members / people on mailing list
3000
No. of paid staff 1 full time 4 part time
No. of volunteers Approx 50
Principal contact for international issues
Roderick Skinner The Somerville Foundation Trustee E-Mail: [email protected]
Principal contact for other issues
John Richardson The Somerville Foundation National Director E-Mail: [email protected]
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Registered Charity: 1138088
