International Resources

In order to get the best possible care it is important to find a doctor who is an expert in treating bone marrow diseases.  The best place to begin looking for a doctor is usually a teaching hospital affiliated with a medical school.  Ask for their hematology department and if they have a doctor who is an expert in your disease.  If you are having trouble locating a teaching hospital either contact your country's medical or physician association or a cancer center or association located in your country or region.

Disease Information

European Organisation for Rare Diseases
www.eurordis.org
+33 (1) 56.53.52.10

Orphanet
A database that provides information in Spanish, English, German and other languages about more than 950 rare diseases and orphan drugs.

Canada

Aplastic Anemia & Myelodysplasia Association of Canada
(888) 840-0039

Canadian Association of PNH Patients

Canadian Organization of Rare Disorders
(877) 302-7273

Denmark

Sjældne Diagnoser Danmark

France

Hemoglobinurie Paroxystique Nocturne & Aplasie Medullaire
01.48.36.13.41

Germany

Aplastische Anamie - PNH

India

Aplastic Anemia Association of India,

New Zealand

Leukaemia and Blood Foundation
0800.15.10.15

New Zealand Organisation for Rare Disorders
+64 4 566 7707

Scandanavia

Nordic-MDS Group
Stockholm
+46-8-774 87 25

Spain

Feder Foundation: Spanish Foundation for Rare Diseases

United Kingdom

Wellchild Families
0845 458 8171

UK- http://www.theaat.org.uk/.

Bone Marrow Transplant Information

Bone Marrow Donors Worldwide
Tel: +31-71-5685300
Bone Marrow Donors Worldwide (BMDW) is the continuing effort to collect the HLA phenotypes of volunteer stem cell donors and cord blood units, and is responsible for the co-ordination of their worldwide distribution. Participants are 58 stem cell donor registries from 43 countries, and 38 cord blood banks from 21 countries.

World Marrow Donor Association
Netherlands
Tel. +31-71-568 5304
email: wmda@europdonor.nl
The World Marrow Donor Association (WMDA) strives to improve and simplify stem cell donation for donors and patients worldwide

National Bone Marrow Program
Interpreters Available - Outside US call 1.612.627.8140

Canadian Blood and Marrow Transplant Group
(604) 874-4944
Multi-disciplinary organization providing leadership and promoting excellence in patient care, research and education in the fields of blood and marrow transplantation (BMT).

South Asian Marrow Association of Recruiters (SAMAR)
Serves patients diagnosed with leukemia and other fatal blood disorders from the South Asian community (people from India, Afghanistan, Bangladesh, East Africa, Guyana, Nepal, Pakistan, Sri Lanka, West Indies) and other minority groups who are in search of Blood Stem Cell /Marrow donors.
(718) 592-0821