PNH Patient Organizations

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Australia

PNH Support Association of Australia
P.O. Box 472
South Yarra
Victoria 3141
Australia
Tel: + 61 (0) 432 321 207
Email: [email protected]
Website: http://www.pnhsaa.org.au

Canada

Canadian Association of PNH Patients
1321 Sherbrooke Street West
Unit A 41
Montreal, Quebec H3G 1J4
Canada
Email: [email protected]
Website: http://www.pnhca.org

Europe-Regional

European Network for Rare and Congenital Anaemias (ENERCA)
IDIBAPS – Hospital Clínic de Barcelona
Villarroel, 170
Block 9, Floor 0
08036 Barcelona
Spain
Tel.: + 34 93 451 59 50
Email: [email protected]
Website: http://www.enerca.org

EURORDIS – Rare Diseases Europe
Plateforme Maladies Rares
96, rue Didot
75014 Paris
France
Tel: + 33 1 56 53 52 10
Email: [email protected]
Website: http://www.eurordis.org

France

Association HPN FRANCE
Hôpital Saint Louis
Service greffe de moelle osseuse T3
1 avenue Claude Vellefaux
75 475 Paris Cedex 10
France
Website: http://www.hpnfrance.com

Germany

Stiftung lichterzellen
Oppenheimstrasse 11
50668 Cologne
Germany
Tel: +49 221 57772276
Website:  http://www.lichterzellen.de

Facebook page: https://www.facebook.com/lichterzellen

Italy

Associazione Italiana Emoglobinuria Parossistica Notturna ONLUS (AIEPN)
c/o Unità Ematologia
Ospedale Policlinico di Milano
via Francesco Sforza 35
20122 Milano
Italy
Email: [email protected]
Website: http://www.aiepn.it

Netherlands

Stichting AA & PNH Contactgroep
Roerstraat 15 – 2
1078 LH Amsterdam
Nederlands
Tel: 0 85 2100651
E-mail: [email protected]
Website: https://www.aaenpnh.nl

New Zealand

PNH Support Association of NZ
Website: http://www.pnhsanz.org.nz

Russian Federation

Другая Жизнь:  Межрегиональная общественная организация помощи пациентам с заболеваниями, связанными с неконтролируемой активацией комплемента
Another Life: Interregional public organization for helping patients with diseases associated with uncontrolled complement activation.
Теl: +7 (915) 258-95-84
Email: [email protected]
Website: http://www.life-complement.com/

Slovenia

Slovensko združenje bolnikov z limfomom in levkemijo
Povšetova 37
1000 Ljubljana
Slovenia
Email: [email protected]
Website: http://www.limfom-levkemija.org/

Spain

Asociación de Hemoglobinuria Paroxís Nocturna (Spanish PNH Association)
Avda. Barcelona nº 174 1º
08700 – Igualada (Barcelona)
Spain
Tel: + 34 93 804 0959
Email: [email protected]
Website: http://www.hpne.org

United Kingdom

PNH National Service
Level 3, Bexley Wing
St James’s Institute of Oncology
Leeds Teaching Hospitals NHS Trust
Beckett Street
Leeds, LS9 7TF
UK
Tel: + 44 0113 20 68625
Email: [email protected]
Website: http://www.pnhleeds.co.uk

— and —

PNH National Service
Kings College Hospitals NHS Foundation Trust
Department of Haematology
Hembleden Wing
Denmark Hill
London SE5 9RS
UK
Tel: +44 020 3299 1039
Email: [email protected]

PNH Support
A registered charitable membership organisation of PNH patients and family members living in England, Wales, and Northern Ireland that provides peer-to-peer support, information, and advocacy on behalf of its members
Email: [email protected]
Website: http://www.pnhuk.org
Facebook page: https://www.facebook.com/groups/838965859533732

United States

Aplastic Anemia & MDS International Foundation, Inc. ( AAMDSIF)
4330 East West Highway, Suite 230
Bethesda, Maryland 20814
USA
Toll-free tel: + 1 800 747 2820
Website: http://www.aamds.org

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
USA
Tel: + 1 203 744 0100
Website: http://www.rarediseases.org

Global

PNH Global Alliance
Postbox 91
4000 AB TIEL
The Netherlands
Email: [email protected]
Website: https://www.pnhglobalalliance.com

 

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