NRBDO
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About.

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.

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

Alpha-1 Antitrypsin Deficiency Canada Inc.
13300 Tecumseh Road East, Suite #241,
Tecumseh, ON N8N 4R8
Tel.: 1.888.669.4583
Web site: 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
Web site: www.AnsweringTTP.org
E-mail: answeringttp@gmail.com 

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
Web site: www.aamac.ca
E-mail: info@aamac.ca

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

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
Web site: www.hemophilia.ca
E-mail: chs@hemophilia.ca

Canadian Immunodeficiencies Patient Organization (CIPO)

25 La Grave St
Winnipeg, MB  R3V 1J1

Tel: 1-877-607-CIPO (2476)
Web site: www.cipo.ca
E-mail: info@cipo.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
Web site: www.raredisorders.ca
E-mail: info@raredisorders.ca

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

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

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

Dr. Bruce Ritchie – Hemophilia/PID/HAE/transfusion medicine
Dr. Bob Shellenberg – PID/HAE
Dr. Stephen Betchel - HAE
Dr Yves Pastore – Sickle Cell Disease
Dr. Yigal Dror – BMF

Network of Rare Blood Disorder Organizations (NRBDO)/Réseau des Associations Vouées aux Troubles Sanguins Rares (RAVTSR)
​is incorporated under the Canada Not-For-Profit Organizations Act
  • Home
  • About
  • Advocacy
  • Events
    • Conference Presentations 2020
    • Conference Presentations 2017
  • Resources
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