The Network of Rare Blood Disorder Organizations (NRBDO)/Réseau des associations vouées aux troubles sanguins rares (RAVTSR) is a coalition of national patient groups, formed to share the best practices in health care delivery for people with rare blood disorders such as hereditary angioedema; aplastic anemia, Fanconi anemia, paroxysmal nocturnal hemoglobinuria (PNH), and myelodysplasia; primary immune deficiency; porphyria, sickle cell disease, thalassemia, thrombotic thrombocytopenic purpura (TTP), hemophilia and von Willebrand disease. 

We work and advocate together in a coordinated fashion, toward high quality, effective, accessible, interdisciplinary care for all Canadians affected by rare blood disorders.

​Our mandate is to improve the healthcare delivery for people affected by rare blood disorders by:

• Working together to ensure the best comprehensive care
• Ensuring a safe and secure blood system
• Supporting the members by sharing best practices in governance
• Developing skills in health care advocacy 
• Avoiding overlap and inefficiencies.

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On May 12, 2015, the NRBDO became incorporated under the Canada Not-For-Profit Corporations Act. 

Members

aHUS Canada (atypical Hemolytic Uremic Syndrome)
Email: info@ahuscanada.org
Website: www.ahuscanada.org

Alpha-1 Antitrypsin Deficiency Canada Inc.
13300 Tecumseh Road East, Suite #241,
Tecumseh, ON N8N 4R8
Tel.: 1.888.669.4583
Website: alpha1canada.ca

Answering TTP (Thrombotic Thrombocytopenic Purpura)
c/o Sydney Kodatsky, Executive Director
22 Prince George Drive
Toronto, Ontario   M9A 1Y1
Tel.: (416) 792-4656
E-mail: answeringttp@gmail.com 
Web site: www.AnsweringTTP.org

Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC)
2201 King Road, Unit #4
King City, ON L7B 1G2
Tel.: 905-780-0698
Tel.: 1-888-840-0039
Fax: 905-780-1648
E-mail: info@aamac.ca
Web site: www.aamac.ca

Canadian Association for Porphyria (CAP)
13604 108 Ave
Edmonton, AB T5M 2C8
Email: canadianassocforporphyria.acp@gmail.com
Web site: www.canadianassociationforporphyria.ca

Canadian Hemophilia Society (CHS)
666 Sherbrooke ouest, Suite 301
Montreal, Quebec  H3A 1E7
Tel.: 514-848-0503
Tel.: 1-800-668-2686
Fax: 514-848-9661
E-mail: chs@hemophilia.ca
Web site: www.hemophilia.ca

Canadian MPN Network (myeloproliferative neoplasm)
Unit 25 – 110 Highland Rd. E
Kitchener, Ontario
N2M 3S1
Canada
Tel: 1-844-644-6766 
Email:  info@canadianMPNnetwork.ca​
Website: canadianmpnnetwork.ca​

Canadian Organization for Rare Disorders (CORD)
151 Bloor Street West, Suite 600
Toronto, Ontario  M5S 1S4
Tel : 416-969-7464
Tel.: 1-877-302-7273
Fax: 416 969-7420
E-mail: info@raredisorders.ca
Website: www.raredisorders.ca

​Fanconi Canada
P.O. Box 38157
Toronto, Ontario  M5N 3A9
Tel.:  416-489-6393
Fax:  416-489-6393
E-mail: admin@fanconicanada.org
Website: www.fanconicanada.org

GBS/CIDP Foundation of Canada
PO Box 80060
RPO Rossland Garden
Whitby, ON L1R 0H1
Tel.: 1-647-560-6842
Website: www.gbscidp.ca
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HHT Canada THH
E-mail: info@hhtcanada.com
Website: www.hhtcanada.com

ImmUnity Canada
Tel: 1-877-607-2476
E-mail: info@immunitycanada.org
Website: www.immunitycanada.org

Platelet Disorder Support Association (PDSA)
Attn: Jennifer DiRaimo, Research Program Manager
Email: jdiraimo@pdsa.org
Phone: 519-476-5309
Website: www.pdsa.org

Sickle Cell Disease Association of Canada (SCDAC)
1030 Mountcastle Crescent
Pickering, Ontario  L1V 5H9
Tel: 905.420.0666
Fax: 905.831.7939
​E-mail: info@sicklecelldisease.ca
Website: www.sicklecelldisease.ca

Thalassemia Foundation of Canada (TCF)
338 Falstaff Avenue, suite 204
North York, ON M6L 3E7
Tel. 416-242-THAL (8425)
Fax: 416-242-8425
​E-mail: info@thalassemia.ca
Website: www.thalassemia.ca

Board of Directors

Whitney Goulstone - Chair
Angela Diano - Treasurer
Josie Sirna - Director
​Riyad Elbard - Director
​Jennifer DiRaimo - Director

Executive Director
Jennifer van Gennip (info@nrbdo.ca)
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Medical Advisory Committee

Dr. Bruce Ritchie – Hemophilia/PID/HAE/transfusion medicine
Dr. Stephen Betschel - PID/HAE
Dr Yves Pastore – Sickle Cell Disease