This session has been designed for the parents, guardians and adult family members of pediatric bone marrow failure disease patients. Drs. Olson and Shimamura will spend the entire session answering your specific questions which you can submit live or in advance to help@aamds.org.
Some of the topics we expect to discuss include:
* Explaining the diagnosis to siblings and other younger family members
* How support groups work for patients under 18
* What should families consider in terms of fertility preservation and future family planning?
* What are some of the longer-term consequences of going to transplant?
* Getting a second opinion while getting care closer to home - how does it work, who can help?
* Are there any other diseases/conditions that may occur later in life?
* How do we best handle the transition from pediatric hematologist/oncologist to adult provider?
* Getting the COVID-19 vaccine ... what do you think?
