The first in-person session of this committee was held in December 2015. The committee addressed activities regarding: “How do we define patient advocacy? Is it personal advocacy navigating one patient through the HCT process or is it the broader concept of social and governmental advocacy towards larger numbers of patients – or both”. 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 related to HCT (pre-and post-transplantation issues) particularly those with emphasis on patient, donor, family, and / or caregiver related topics. There will be mentorship and harmonization in the development and distribution of patient / public educational materials.
Meetings & Teleconfereces
The group meets by telephone conferences (quarterly).
Patient Advocacy / Advisory Committee has completed the following projects:
- During 2022, the Patient Advocacy / Advisory Committee completed the following projects: -Participate in the cGVHD NIH group; -Present at the ASTCT/WBMT Session at the Tandem Meetings; -Present at the WBMT Workshop in Pakistan.
The Patient / Advisory Committee continues to work on the following projects:
- Participate in GVHD Day (organized by GVHD Alliance).
- Continue to expand the committee’s global network of patient’s groups and seek relevant partnerships.
- Organize Patient Days at national or international HCT conferences.
- Work on an application for patients on their mobile device.
- The Patient Advocacy / Advisory Committee identified the following projects for the future: • Participate in patient activities during the ASTCT (formerly Tandem) Meeting and EBMT Annual Meeting, such as the Patient’s Day at the EBMT Annual Meeting with an effort to make the sessions more educational and broadly informative. • Participate in future WBMT sponsored workshops with advocacy position papers created as appropriate. • Take part in the international group on Chronic GVHD that has been established and will also cover aspects on patients’ point of views and accessibility to immunosuppressants. • Develop a PAAC site within the WBMT website. It will include information regarding diseases and steps of transplantation. We already received information from BMT Infonet. • Engage more patients in video meetings. • Organize paper on “How to” build a patient advocacy organization. • Survey on who funds transplantation in different countries.
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