Resources

Links for Professionals

Health care professionals who are interested in more information about PNH may find the following organizations of interest:

American Nephrology Nurses’ Association

East Holly Avenue, Box 56
Pitman, NJ 08071-0056
Telephone: +1 856 256 2320
Website: http://www.annanurse.org

American Society of Hematology (ASH)

1900 M Street, NW
Washington, DC  20036
USA
Tel: + 1 202 776 0544
Website: http://www.hematology.org

American Society of Nephrology

1510 H Street, NW
Suite 800
Washington, DC 20005
Telephone: +1 202 640 4660
Website: http://www.asn-online.org

European Hematology Association (EHA)

Koninginnegracht 12b/13
2514 AA The Hague
The Netherlands
Tel: + 31 (0)70 3020 099
Website: http://www.ehaweb.org

European Network for Rare and Congenital Anaemias (ENERCA)

University of Barcelona
Red Cell Pathology Unit
C/Villarroel, 170
08036 Barcelona
Spain
Tel.: + 34 93 451 5950
Fax: + 34 93 227 1764
Website: http://www.enerca.org

EURORDIS (European Organisation for Rare Diseases)

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

Infusion Nurses Society (INS)

315 Norwood Park South
Norwood, MA  02062
USA
Telephone:  + 1 781 440 9408
Website: http://www.ins1.org

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

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

Canada

Canadian Association of PNH Patients

1321 Sherbrooke Street West
Unit A 41
Montreal, Quebec
H3G 1J4
Tel: 514-983-8864
Email: info@pnhca.org
Website: http://www.pnhca.org

Europe-Regional

EURORDIS (European Organisation for Rare Diseases)

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

HematosLife

A web-based rare blood disease community
Email: Project@HematosLife.org
Website: http://www.hematoslife.org

European Network for Rare and Congenital Anaemias

University of Barcelona
Red Cell Pathology Unit
C/Villarroel, 170
08036 Barcelona
Spain
Tel.: + 34 93 451 5950
Fax: + 34 93 227 1764
Email: enerca@enerca.org
Website: http://www.enerca.org

France

Association HPN FRANCE

Website: http://www.hpnfrance.com

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

Lichterzellen

Website: http://aa-pnh.info
Facebook page: https://www.facebook.com/lichterzellen

Italy

Associazione Italiana Emoglobinuria Parossistica Notturna ONLUS (AIEPN)

Unità di Ematologia – padiglione Granelli
Fondazione IRCCS Ca’ Granda – Ospedale Maggiore Policlinico
Via Francesco Sforza 35
20122 Milano
Italy
Email: info@aiepn.it
Website: www.aiepn.it

Netherlands

HematosLife Nederland

Postbus 83
1670 AB Medemblik
Nederland
Tel: + 31 (0)85 2100652
Website: http://www.bloedziekten.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)

Sant Carles 31 2º 4ª
08700 – Igualada (Barcelona)
Spain
Tel: + 34 617080198
Fax: + 34 938040959
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

PNH Support

Website: www.pnhuk.org
Facebook page: https://www.facebook.com/groups/838965859533732

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: + 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
Toll-free:  + 1 800 999 6673
Website: http://www.rarediseases.org

PNH Research and Support Foundation

PO Box 10983
Rockville, MD 20849
USA
Tel: + 1 888 582 9993
Website: http://www.pnhfoundation.org

PNH Support Group

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