The mission of the Patient Advocacy / Advisory Committee is to recommend to the Executive Committee policies, programs, and actions pertaining to the establishment and / or support of international patient advocacy groups and activities. This includes projects in collaboration with international disease or treatment specific organizations that are scientifically or practically related to stem cell transplantation (pre- and post-transplantation issues) particularly those with emphasis on patient, donor, family, and / or caregiver subject matter. There will be mentorship and harmonization in the development and / or distribution of (access to) patient / public educational materials.
Meetings & Teleconfereces
The group meets annually face-to-face at the EBMT meeting and has quarterly telephone conferences throughout the year. The next meetings are scheduled on Wednesday, September 23 and Wednesday, December 16.
Patient Advocacy / Advisory Committee has completed the following projects:
- Distributed a letter to patient advocacy and support groups worldwide to promote BMT awareness days in September: World Lymphoma Awareness Day, World Marrow Donor Day, and World Patient Safety Day.
The Patient / Advisory Committee continues to work on the following projects:
- Build an information center on WBMT website with materials on issues like side effect of treatments, rehabilitation, vaccination post-transplant, eating problems, how we motivate transplant patients, physical problems during transplant, FAQ, etc.
- Transplant patients and COVID19: How transplant patient experience this tough time? How is it to be a transplant patient or post-transplant patient during Corona time?
- Taking an active part in TCT and EBMT patient’s Days
Want to join us?
Send an e-mail to mail to firstname.lastname@example.org