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International Directory

If you know of an organisation that would like to be in our International Directory or you have spotted an inaccuracy please email directory@thesf.org.uk. You can download a PDF of the International Directory.

Heart Kids Australia

Heart Kids Australia

Heart Kids Australia, PO Box 46, Kogarah NSW 1485
Country(ies) covered: Australia
Organisation contact:
Jeanette Manson jmfire@optusnet.com.au
No. of members: TBC
No. of paid staff:
TBC
No. of volunteers:
Not known
Principal contact for international issues:
Linda Clark linda.clark@heartkids.org.au
Principal contact for other issues:
Alan Bowden (CEO) alan.bowden@heartkids.org.au

Belgium

Hartekinderen

Hartekinderen, FORTIS 035-4805851-27, Hartekinderen vzw, Elzenstraat 20, 2390 Malle
Country(ies) covered: Belgium
Official status: Registered
Organisation contact:
info@hartekinderen.be
Website: 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

Canada

Canadian Congenital Heart Alliance (CCHA)

Canadian Congenital Heart Alliance (CCHA), C4-233 Cross Avenue, P.O. Box233, Oakville, ON, L6J 2W9, Canada
Country(ies) covered: Canada
Offical status: CCHA is a registered charity in Canada. #832594329RR0001
Organisation contact:
communications@cchaforlife.org
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 communications@cchaforlife.org
Principal contact for other issues:
Shelagh Ross, CCHA president communications@cchaforlife.org

Denmark

Hjerteforeningen GUCH

Hjerteforeningen, Hauser Plads 10, 1127, Kobenhavn K, Denmark
Country(ies) covered: Denmark
Offical status: Part of a parent organisation and a main heart organisation
Organisation contact:
Kirsten V Hansen +45 388 115 67
Website: 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 formand@guch.dk
Lene Schulz lene@guch.dk
Principal contact for other issues:
Kirsten V Hansen formand@guch.dk

Europe

European Congenital Heart Group (ECHG)

The ECHG is a working group and has no Official Address
Country(ies) covered: Europe
Offical status: The ECHG is a voluntary organisation comprising of the national groups representing adults with ACHD
Organisation contact:
Paul Willgoss ECHG@hotmail.com
No. of members/people on mailing list: TBC
No. of paid staff: 0
Principal contact for international issues:
Paul Willgoss ECHG@hotmail.com
Principal contact for other issues:
Paul Willgoss ECHG@hotmail.com

Europe

European Congenital Heart Disease Organisation (ECHDO)

Grünauerstrasse 10, 4020 Linz, Austria
Country(ies) covered: Europe
Offical status: TBC
Organisation contact:
Michaela Friesen-Zrost (Coordinator) m.friesen-zrost@herzkinder.at
Tel: +43 66 488 432 802 (Mobile number)
Website: echdo.org
Events: Events Page
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) m.friesen-zrost@herzkinder.at
Principal contact for other issues:
Michaela Friesen-Zrost (Coordinator) m.friesen-zrost@herzkinder.at

Finland

The Finnish Association for Heart Children and Adults

The Finnish Association for Heart Children and Adults, Oltermannintie 8, 00620 Helsinki, Finland
Country(ies) covered: Finland
Offical status: Registered
Organisation contact:
toimisto@sydanlapsetja-aikuiset.fi
Website: www.sydanlapsetja-aikuiset.fi
Events: National / Regional
No. of members/people on mailing list: 2000
No. of paid staff: 3
Principal contact for international issues:
Katja Laine katja.laine@sydanlapsetjaaikuiset.fi
Principal contact for other issues:
Katja Laine katja.laine@sydanlapsetjaaikuiset.fi

Germany

Jemah

Jemah, c/o Heike Appold, 16 Bergstrasse, 97 320, Mainstockheim
Country(ies) covered: Germany
Offical status: GUCH Group
Organisation contact:
T: +49 (0)9321-268905
F: +49 (0)721-151388114
E-Mail: info@jemah.de
Website: www.jemah.de/cms/
Events: Page
No. of members/people on mailing list: 300
No. of paid staff: 0
No. of volunteers: 40
Principal contact for international issues:
erster.vorsitzender@jemah.de
Principal contact for other issues:
zweiter.vorsitzender@jemah.de

Greece

Panhellenic Congenital Heart Disease Association

Panhellenic Congenital Heart Disease Association, 8 Kassaveti str., Patisia, Athens
Country(ies) covered: Greece
Offical status: GUCH Group
Organisation contact:
kardia2005@hotmail.com
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) khortis@yahoo.gr
Principal contact for other issues:
Costas Hortis (chairman) khortis@yahoo.gr

Italy

Associazione Italiana dei Cardiopatici Congeniti Adulti

Associazione Italiana dei Cardiopatici Congeniti Adulti, via G.Pascoli, 37 20097 San Donato Milanese (MI)
Country(ies) covered: Italy
Offical status: GUCH Group
Organisation contact:
giocampioni@libero.it
Website: www.aicca.it
Events: Page
No. of members/people on mailing list: TBC
No. of paid staff: TBC
No. of volunteers: TBC
Telefax: +390252774912
Giovanna Campioni: +393474616128
Principal contact for international issues:
edward.callus@gmail.com
Principal contact for other issues:
giocampioni@libero.it

Ireland

Chairde mo Chroi

Heart Children Ireland, Carmichael House, 7 Bruinswick Street North, Dublin, Ireland
Country(ies) covered: Ireland
Offical status: Affilated with HCI – Registered Charity
Organisation contact:
T: (00 353 1) 8740990
heartchildren@eircom.net
Website: www.heartchildren.ie
Events: Page
No. of members/people on mailing list: 800
No. of paid staff: 2
No. of volunteers: 0
Principal contact for international issues:
Margaret Rodgers heartchildren@eircom.net
Principal contact for other issues:
Unknown

Malta

Beating Hearts Malta

5/5B Peralta Court St Julians Terrace, St Julians, Malta STJ 1062
Country(ies) covered: Malta
Offical status: Voluntary Organisation
Organisation contact:Katrina Aquilina
Tel: + 00 356 79468338, info@beatingheartsmalta.org
Website: No active website
Events: 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 info@beatingheartsmalta.org
Principal contact for other issues:
Katrina Aquilina info@beatingheartsmalta.org

Netherlands

Netherlands Heart Foundation

Netherlands Heart Foundation, Prinses Catharina Amaliastraat 10, 2496 XD Den Haag
Country(ies) covered: Holland
Offical status: National Foundation for all forms of heart disease.
Organisation contact:
Head Office
Phonenumber: + 31 70 - 315 55 55
Faxnumber: + 31 70 - 335 28 26
Website: www.hartstichting.nl 
Events: n/a
Principal contact for international issues: Peter Nieuwendijk, Egboet 42, 1671 LK MEDEMBLIK, The Netherlands
Email: p.nieuwendijk@quicknet.nl, Phone: +31 227-545916
Principal contact for other issues:
n/a

New Zealand

@Heart 'Supporting Heart Kids Through Life'

@Heart 'Supporting Heart Kids Through Life', PO Box 108-034 Symonds Street Auckland 1150 New Zealand
Country(ies) covered: New Zealand
Offical status: Registered
Organisation contact:
T: (+64) 09-377 9950
F:(+64) 09-377 9954
heartnz@heartnz.org.nz
Website: www.heartchildren.org.nz
Events: Page
No. of paid staff: 21 (Not all are full time)
Principal contact for international issues:
Lorraine Warshaw lorraine.warshaw@heartnz.org.nz
Principal contact for other issues:
Lorraine Warshaw lorraine.warshaw@heartnz.org.nz

UK

Children’s Heartbeat Trust

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
Organisation contact:
info@childrensheartbeattrust.org
Tel: +44 (0) 7584164815
Website: www.childrensheartbeattrust.org
Events: page
No. of members/people on mailing list: 1,000
No. of paid staff: 1
Principal contact for international issues:
Sarah Quinlan: sarah@childrensheartbeattrust.org
Principal contact for other issues:
Sarah Quinlan: sarah@childrensheartbeattrust.org

Northern Ireland

Heartbeat NI

Heartbeat NI, 9 Turloughs Hill, Annalong, Co Down BT34 4XD
Country(ies) covered: Northern Ireland
Offical status: Recognised as a charity by HMRC – No XR78474 (No Charity Commission NI)
Organisation contact:
Irwyn McKibbin
T: +44 (0) 7801 370 297
info@heartbeatni.org
Website: www.heartbeatni.com
Events: Page
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 mckibbin@btinternet.com
Principal contact for other issues:
Irwyn McKibbin mckibbin@btinternet.com

Norway

Foreningen Voksne med Medfødt Hjertefeil

Foreningen Voksne Med. Medfødt Hjertefeil, Øvre Vollgate 11, Oslo
Country(ies) covered: Norway
Organisation contact:
Marit Haugdahl vmh-marit@ffhb.no
Website: www.vmh.no
Events: Page
No. of members/people on mailing list: 350
No. of paid staff: 1
Principal contact for international issues:
vmh-marit@ffhb.no
Principal contact for other issues:
vmh-marit@ffhb.no

Poland

"Childs Heart" Foundation

The Dina Radziwillowa "Child`s Heart" Foundation, Narbutta, 26/1 02-536 Warsaw
Country(ies) covered: Poland
Offical 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 j.kacha@wp.pl
Hanna Milczarek hanna.milczarek@sercedziecka.org.pl
Principal contact for other issues:
J.Kacha j.kacha@wp.pl
Hanna Milczarek hanna.milczarek@sercedziecka.org.pl

Russia

Arkangelsk Regional Organisation of GUCH

Arkangelsk Regional Organisation of GUCH, Russia, Arkangelsk, Kasatkinoi st., 5-1-108
Country(ies) covered: Russia
Organisation contact:
T:(+79) 00642974618
Julia T:(+79) 00115512931
Website: www.guch.ru
Forum: Forum.dearheart.ru
No. of members/people on mailing list: 30
No. of paid staff: 0
No. of volunteers: All staff are Volunteers
Principal contact for international issues:
arh.guch@gmail.com
Principal contact for other issues:
arh.guch@gmail.com
jmaximova@mail.ru

Scotland

Bravehearts

Bravehearts, 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
Organisation contact:
Gill Mitan bravehearts@youngheart.info
Website: www.youngheart.info
Events: page
No. of members/people on mailing list: 360
No. of paid staff: 0
No. of volunteers: 18
Chartity Number: SC 035499
Principal contact for international issues:
Gill Mitan bravehearts@live.co.uk
Principal contact for other issues:
John Fegan (SACHD Chairman) chairman@youngheart.info

Switzerland

Cuore Matto

Cuore Matto, Marktgasse 31, 3011 Bern, Switzerland
Country(ies) covered: Switzerland
Official status: Association under Swiss law
Organisation contact:
T:(+41) 79 912 00 60
info@cuorematto.ch
Website: www.cuorematto.ch
Events: page
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 monique.kauer@cuorematto.ch
Noemi de Stoutz noemi.de.stoutz@cuorematto.ch
Principal contact for other issues:
Monique Kauer monique.kauer@cuorematto.ch
Noemi de Stoutz noemi.de.stoutz@cuorematto.ch

UK

Children's Heart Federation

Children's Heart Federation, 2 – 4 Great Eastern Street, London, EC2A 3NW
Country(ies) covered: England, Ireland, NI, Scotland, Wales.
Official status: Registered Charity. Number: 1120557
Organisation contact:
Samantha Johnson samanthaj@chfed.org.uk
Tel: 0207 - 4220630
Website: www.chfed.org.uk
Events: page
No. of members/people on mailing list: Approx 10,000
No. of paid staff: 6 full time 1 part time
No. of volunteers: Approx 15
Principal contact for international issues:
Anne Keatley-Clarke akc@chfed.org.uk
Tel: 0207 - 4220630
Principal contact for other issues:
Samantha Johnson (Operations manager)
samanthaj@chfed.org.uk
Tel: 0207 - 4220630

UK

The Somerville Foundation

The Somerville Foundation, Saracen's House, 25 St Margaret's Green, Ipswich, IP4 2BN
Country(ies) covered: UK
Official status: The Somerville Foundation is a Registered Charity in England & Wales no. 1138088
Organisation contact:
T: +44(0)1473252007
admin@thesf.org.uk
Website: www.thesf.org.uk
Events: page
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:
John Richardson
The Somerville Foundation National Director
john@thesf.org.uk

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