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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.
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:
On May 12, 2015, the NRBDO became incorporated under the Canada Not-For-Profit Corporations Act.
- 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.
Members
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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 Immunodeficiencies Patient Organization (CIPO) 25 La Grave St Winnipeg, MB R3V 1J1 Tel: 1-877-607-CIPO (2476) E-mail: info@cipo.ca Website: www.cipo.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 HHT Canada THH E-mail: info@hhtcanada.com Website: www.hhtcanada.com 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)
Angela Diano - Treasurer
Josie Sirna - Director
Riyad Elbard - Director
Jennifer DiRaimo - Director
Executive Director
Jennifer van Gennip (info@nrbdo.ca)
Medical Advisory Committee
Dr. Bruce Ritchie – Hemophilia/PID/HAE/transfusion medicine
Dr. Stephen Betschel - PID/HAE
Dr Yves Pastore – Sickle Cell Disease
Dr. Stephen Betschel - PID/HAE
Dr Yves Pastore – Sickle Cell Disease