PNH Patient Organizations

If you are a person who has been recently diagnosed or who is living with Paroxysmal Nocturnal Hemoglobinuria (PNH), or a family member, loved one, or care giver, you can find more information about PNH from the following organizations.

Australia

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

Canada

Canadian Association of PNH Patients
1321 Sherbrooke Street West
Unit A 41
Montreal, Quebec
Canada
strongG 1J4
Tel: 514-983-8864
Email: info@pnhca.org
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: enerca@enerca.org
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: eurordis@eurordis.org
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

Aplastische Anämie – PNH
Web-based PNH patient forum
Website: http://aa-pnh.info/forum/index.php

Aplastische Anämie e.V.
Am Glindhorst 5a
D-23843 Bad Oldesloe
Tel.: +49 (0)4531-41226950
info@aplastische-anaemie.de
Website: http://www.aplastische-anaemie.de

Lichterzellen
Oppenheimstrasse 11
Cologne
Germany
Tel: +49 221 57772276
Website: http://aa-pnh.info
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: info@aiepn.it
Website: http://www.aiepn.it

Netherlands

Stichting AA & PNH Contactgroep
Roerstraat 15 – 2
1078 LH Amsterdam
Nederland
Tel: 0 85 2100651
E-mail: info@aaenpnh.nl
Website: https://www.aaenpnh.nl

New Zealand

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

Slovenia

Slovensko združenje bolnikov z limfomom in levkemijo
Povšetova 37
1000 Ljubljana
Slovenia
Email: limfom.levkemija@gmail.com
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: info@hpne.org
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: pnh.leeds@nhs.net
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: kch-tr.pnh@nhs.net

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: contact@pnhuk.org
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 0 6813-1968
USA
Tel: + 1 203 744 0100
Website: http://www.rarediseases.org

 

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