Privacy and Other Policies
AAMDSIF is committed to operating with the highest level of accountability and transparency. Please click through to each category of policy for more information.
Please make a donation to the Aplastic Anemia and MDS International Foundation this holiday season.
AAMDSIF is committed to operating with the highest level of accountability and transparency. Please click through to each category of policy for more information.
The AAMDSIF Patient Advisory Council (PAC) was created in 2008. Its purpose is to serve as a resource to the AAMDSIF staff in the development and review of patient education materials, programs and services. Members of the PAC include doctors, nurses, patient educators, patients and caregivers, all of whom have an interest in supporting the needs of people living with aplastic anemia, MDS, PNH or another bone marrow failure disease. Review by the PAC provides patients and their families with the full confidence that they are receiving the most accurate, reliable and up-to-date information from the Foundation.
If you want a copy of your medical records, you must submit a written request to the hospital or the doctor's office. The law requires that patients provide doctors with written authorization to disclose medical records or the information contained in them. Some hospitals have their own form that needs to be completed. Patients may receive copies of their medical records, however the originals must remain in the physician's or hospital's file. Please consult with your physician's office for access to digital records.
This is an individual decision and should be discussed in detail with your doctor and the medical team that would be involved in either treatment approach. They can help you understand your specific risks and potential benefits of these options.
It is important to weigh both the risks and the benefits of a bone marrow/stem cell transplant. A transplant doctor can answer your questions and help you decide if a transplant is an option for you.