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, 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

aHUS Canada (atypical Hemolytic Uremic Syndrome)
Email: [email protected]
Website: www.ahuscanada.org

Alpha-1 Antitrypsin Deficiency Canada Inc.
246 Stewart Green SW
​Calgary, AB  T3H 3C8
Tel.: 1.888.669.4583
Website: alpha1canada.ca

Answering TTP (Thrombotic Thrombocytopenic Purpura)
E-mail: [email protected] 
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: [email protected]
Web site: www.aamac.ca

Canadian Association for Porphyria (CAP)

Email: [email protected]​
Web site: www.porphyriacanada.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: [email protected]
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:  [email protected]​
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: [email protected]
Website: www.raredisorders.ca

​Fanconi Canada
P.O. Box 38157
Toronto, Ontario  M5N 3A9
Tel.:  416-489-6393
Fax:  416-489-6393
E-mail: [email protected]
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
​
ImmUnity Canada
Tel: 1-877-607-2476
E-mail: [email protected]
Website: www.immunitycanada.org

Platelet Disorder Support Association (PDSA)
Tel: 1-440-746-9003 (US)
Email: 
[email protected]
Website: www.pdsa.org

Sickle Cell Awareness Group of Ontario (SCAGO)
Email: [email protected]
Website: www.sicklecellanemia.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: [email protected]
Website: www.thalassemia.ca

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Board of Directors

Angela Diano - Chair
Jennifer DiRaimo - Treasurer
Josie Sirna - Secretary
​Jon Holmes - Director
Rick Waines - Director
Dr. Philip Eappen - Director
Andrea 
Fernandez - Director

Executive Director
Jennifer van Gennip ([email protected])
​

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
    • National DRD Strategy
    • Newborn Screening
    • Plasma
  • Events
    • Conference Presentations 2020
    • Conference Presentations 2017
  • Resources
  • Member Portal
  • Contact