We’re happy to introduce a new partner to Patient Worthy’s mission of advocating for rare disease patients!
The Aplastic Anemia and MDS International Foundation (AAMDS) supports, connects and educates patients, caregivers and health professionals on bone marrow failure diseases worldwide.
Aplastic anemia is a rare blood disorder which occurs when the body’s bone marrow stops making enough new blood cells due to damaged stem cells and myelodysplastic syndromes (MDS) are a group of conditions that prevent bone marrow from preventing the amount of healthy blood cells that the body needs.
AAMDS promotes and invests in collaborative clinical research to accelerate the discovery of better treatments and cures for aplastic anemia, MDS, PNH and related bone marrow failure diseases.
They also do substantive work with health professionals, including being administrator of the MDS Clinical Research Consortium – a unique collaboration of six major academic medical centers designed to maximize the results of MDS clinical trials, to the benefit of patients everywhere.
They also provide services such as:
- Support from patient educators
- Educational materials on drugs, treatments, and materials
- Peer Support Network
- An online academy that provides webinars, live-streamed classes, interviews with experts and interactive courses
And so much more!
- Wednesday, August 8
AML and Children: Understanding Diagnosis and Treatment - Thursday, August 23
Establishing a Care Plan After Treatment: What’s Next? - Thursday, August 30
Under the Microscope at EHA and ASCO 2018: Research Updates on MDS
