Supporting young people and adults born with a heart condition

International Congenital Heart Organization Directory

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 ACHD AICCA CEO C/O CCHA CHD ECHG GUCH HCI HMRC NI N/A TBC

Actual Adult Congenital Heart Disease Associazione Italiana dei Cardiopatici Congeniti Adulti Chief Executive Officer Care Of Canadian Congenital Heart Alliance Congenital Heart Disease European Congenital Heart Group Grown Up Congenital Heart Health Care Informed Her Majesties Revenue & Customs Northern Ireland Not Applicable 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 Name of organisation Official Address

Organization Details Heart Kids Australia

Country(ies) covered Main organisation contact Website Events Page No. of volunteers Principal contact for international issues Principal contact for other issues

Heart Kids Australia PO Box 46 Kogarah NSW 1485 Australia

Jeanette Manson: E-Mail:[email protected] http://www.heartkids.org.au http://www.heartkids.org.au/ind ex.php/state/news_item/55/ Not known at present time Linda Clark E-Mail: [email protected] 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 / TBC people on mailing list 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:

Website

www.cchaforlife.org

[email protected]

No. of members / 355 people on mailing list No. of paid staff

0

No. of volunteers

Approx. 60

Principal contact for international issues

Shelagh Ross, CCHA president:

Principal contact for other issues

Shelagh Ross, CCHA president:

[email protected] [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 / 150 (50 members on the mailing people on mailing list 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/ECH Group

No. of members / TBC people on mailing list 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/page s/Echdo-European-CongenitalHeart-DiseaseOrganisation/268152066560428

No. of members / 41 (Association Members) people on mailing list 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.sydanlapsetjaaikuiset.fi/fin/mita/mita/muuta_to imintaa/?id=112 Regional: www.sydanlapsetjaaikuiset.fi/fin/mita/mita/aluetoimi ntaa/?id=10

No. of members / 2000 people on mailing list 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&Item id=28

No of members / 300 people on mailing list 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 / 200 people on mailing list 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 / TBC people on mailing list 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/view events

No of members / 800 people on mailing list 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/Beati ngHeartsMalta

No of members / 20 - 30 At present people on mailing list 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 Peter Nieuwendijk international issues Egboet 42 1671 LK MEDEMBLIK The Netherlands Email: [email protected] Phone: +31 227-545916 Principal contact for N/A other issues

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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/getinvolved.html

No. of paid staff

21 (Not all are full time)

Principal contact for Lorraine Warshaw: international issues [email protected] Principal contact for Lorraine Warshaw: [email protected] other issues

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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.childrensheartbeattru st.org/news-events/

No. of members / people on mailing list

1000

No. of paid staff

1

Principal contact for Sarah Quinlan: international issues [email protected] Principal contact for Sarah Quinlan: [email protected] other issues

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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 Irwyn McKibbin: international issues [email protected] Principal contact for Irwyn McKibbin: other issues [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?opt ion=com_content&view=article&i d=54&Itemid=80

No. of members / people on mailing list

350

No. of paid staff

1

Principal contact for E-Mail: international issues [email protected] Principal contact for E-Mail: other issues [email protected]

20

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 J.Kacha: international issues [email protected] Hanna Milczarek: [email protected]

Principal contact for J.Kacha: [email protected] other issues 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 E-Mail: [email protected] international issues Principal contact for E-Mail: [email protected] other issues 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/Event spage.htm

No of members / people on mailing list

360

No. of paid staff

0

No. of volunteers

18

Principal contact for Gill Mitan international issues E-Mail: [email protected] Principal contact for John Fagen (SACHD Chairman): other issues 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?o ption=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 Monique Kauer international issues E-Mail: [email protected] Noemi de Stoutz E-Mail: [email protected] Principal contact for Monique Kauer other issues E-Mail: [email protected] Noemi de Stoutz E-Mail: [email protected] 24

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 / Approx 10,000 people on mailing list 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/getinvolved/attend-events.aspx

No. of members / 3000 people on mailing list 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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27 Registered Charity: 1138088