The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world. We are a patient-focused, patient-centered organization, serving patient and families throughout the three phases of bone marrow failure diseases:
- the life changing phase of diagnosis
- the life threatening phase of treatment
- the life-long phase of living with a chronic disease
The strategic plan for the Aplastic Anemia & MDS International Foundation states the organizational priorities for 2014 – 2016 include:
- Professional Education
- Patient Education
- Public Awareness and Information
- Patient and Family Support
- Advocacy and Public Affairs
Goal 1: Increase awareness of bone marrow failure diseases among health care providers at all levels in order to accelerate time-to-diagnosis and treatment, to improve clinical outcomes, and to enhance the care experience.
Goal 2: Fully establish the Foundation as the “resource of choice” related to bone marrow failure diseases for patients, family members, and caregivers.
Goal 3: Promote, fund, and administer promising basic, clinical, and translational research initiatives with the longer term goal of finding cures for bone marrow failure diseases.
Goal 4: Build expanded awareness and understanding of bone marrow failure diseases among the public-at-large in the U.S. and overseas.
Goal 5: Develop and sustain diverse and accessible support networks and services for patients, family members, and/or caregivers.
Goal 6: Join with other advocacy organizations to identify and pursue selected legislative and regulatory issues and opportunities at the federal and state level that advance or affect research, treatment, and reimbursement related to bone marrow failure diseases or other rare disorders.
Goal 7: Secure the resources necessary and take additional steps to ensure that the Foundation is a growing, sustainable, effective, and productive organization that can satisfy patient/stakeholder needs.