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Links for Patients

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
Fax: + 938040959
Email: info@pnhsaa.org.au
Website: http://www.pnhsaa.org.au

France

European Organisation for Rare Diseases (Eurordis)

Plateforme Maladies Rares
102, rue Didot
75014 Paris
France
Tel: +33 (1) 56.53.52.10
Website: http://www.eurordis.org

Germany

Aplastische Anämie – PNH

An online PNH patient forum - http://aa-pnh.info/forum/index.php

Aplastische Anämie ev

An online PNH information resource - http://www.aplastische-anaemie.de

Aplastische und PNH

An online PNH patient community and information resource - http://aa-pnh.info

PNH - Paroxysmale Nächtliche Hämoglobinurie

An online patient information resource - http://www.pnh-info.de

Netherlands

HematosLife Nederland

Postbus 83
1670 AB Medemblik
Nederland
Tel: 085 2100652
Website: http://www.bloedziekten.nl

Spain

HPN España / Spanish PNH Society

Sant Carles 31 2º 4ª
08700 - Igualada (Barcelona)
Spain
Tel: + 617080198
Fax: + 938040959
Email: info@hpne.org
Website: http://www.hpne.org

United Kingdom

Haematological Malignancy Diagnostic Service

At Leeds Teaching Hospitals (UK) - offers PNH patient information and a message board at http://www.hmds.org.uk.

United States

Aplastic Anemia & MDS International Foundation, Inc. ( AA&MDSIF)

100 Park Avenue, Suite 108
Rockville, MD 20850
USA
Tel: 301-279-7202
Toll-free telephone: 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
Tele: 203-744-0100
Toll-free: 800-999-6673
Website: http://www.rarediseases.org

PNH Research and Support Foundation

PO Box 10983
Rockville, MD 20849
USA
Tel: 888-582-9993
Website: http://www.pnhfoundation.org

PNH Support Group

An online community - http://www.pnhdisease.org

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