As 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 Aplastic Anemia and MDS International Foundation strives to be the resource of choice for patients and their families living with these diseases. AAMDSIF is working to increase patient and health professional knowledge of bone marrow failure diseases, provide patient education and support, to increase public awareness and to support basic and clinical research.

>Increase awareness of bone marrow failure diseases among health providers at all levels in order to accelerate time-to-diagnosis and treatment to improve clinical outcomes, and to enhance patient care. >Promote, fund, and administer promising basic, clinical, and translational research initiatives with the longer term goal of finding cures for bone marrow failure diseases. >Increase awareness and understanding of bone marrow failure diseases among the public-at-large in the U. S. and overseas. >Develop and sustain accessible support networks and services for patients, family members, and/or caregivers. > 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 and treatment related to bone marrow failure diseases.

AAMDSIF has 12 employees, assisted by volunteers throughout the United States. AAMDSIF's Board of Directors provides financial and strategic oversight and is comprised of 12 community members and business leaders, each of whom has a connection to bone marrow failure disease. AAMDSIF's Medical Advisory Board (MAB) includes experts from the nation's leading medical and research institutions. This 22-member board advises and provides professional and technical expertise to the AAMDSIF Board of Directors and staff. The MAB is also responsible for peer review of research grant applications and recommendations for funding. The MDS Clinical Research Consortium is a critical partnership with six of the leading medical centers treating MDS patients in the U. S. A 21-member Patient Education Council serves as a resource in the development and review of patient education programs and materials. AAMDSIF Regional Patient and Family Conferences are held each year.

AAMDSIF conducts regular programmatic assessments using a variety of evaluative tools. Reports are presented to our Patient Education Committee and the Programs and Services Committees for their review and input. AAMDSIF also conducts regular patient evaluation surveys to determine the effectiveness of workshops, conferences, seminars, webinars and other educational offerings. Health professional continuing education credits are validated by a third-party vendor. The AAMSDIF board reviews program performance on a quarterly basis and provides broad oversight to the organization.

www. AAMDS. org: A primary source on treatment, research, and patient services. Online Academy: Features free webinars, webcasts, interactive learning modules and interviews with leading medical experts Patient and family conferences: Conferences around the US are held annually - Community Connection support groups: These meet nationwide, enabling patients and families to connect with each other, share information, and raise awareness in their communities. Publications that include medical research summaries and a family of publications Funding scientific research: Since 1989, AAMDSIF has issued grants totaling more than $5 million have been awarded to over 90 researchers. Educational programs for health professionals. MDS Clinical Research Consortium: Launched in 2012, the consortium is a collaboration of six leading medical centers to advance treatments and improve outcomes for MDS patients.