Supporting Canadians with bone marrow failure diseases
The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a leading funder of research into bone marrow failure diseases in Canada. Our volunteer-run organization supports patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).
Patient Support Meetings
AAMAC holds FREE patient support meetings across Canada.
We have meetings in Ottawa, London, Hamilton, Edmonton, Quebec, and Toronto this spring. Click to find a meeting near you!
We Need your Help with a Survey for MDS Patients
Are you a MDS patient and transfusion dependent? A team of experts in the field of hematology are conducting a survey specifically related to red blood cell transfusion practices.
Purpose of the Survey
To understand the landscape of RBC transfusions in dependent MDS patients.
The scope of the survey will cover: frequency of transfusions; location of transfusion; length of transfusion; travel time; impacts on quality of life (QOL); how to improve QOL; transfusion thresholds; transfusion waiting times once symptomatic, same day cross matches or not, etc.
The results will be disseminated widely (and published). What is learned will be used to plan a research study whose goal is to improve the RBC transfusion experience for patients.