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 by telephone conferences (quarterly).
Patient Advocacy / Advisory Committee has completed the following projects:
- During 2021, the Patient Advocacy / Advisory Committee completed the following projects: • Participate in propagating a survey on behalf of EBMT Patient Engagement Task Force and the EBMT Patient Advocacy Group to “understand how all stakeholders stand regarding patient engagement in research and care”. • Propagate a patient survey from the EBMT among patients’ groups in Latin America and South America. • Presenting at the EBMT Patient Advocacy Group session.
The Patient / Advisory Committee continues to work on the following projects:
- Develop a survey (based on a NMDP/Be The Match survey) of needs and expectations to be distributed to patient groups.
- 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. • Implement a new meeting schedule dividing the globe into two parts: Americas-Europe-Middle East (AEM), and Asia-Pacific-Australia (APA). • Engage more patients in video meetings. • Arrange a webinar for patients on GVHD. • Try to organize an in-person meeting at EBMT/ASTCT, according to COVID-19 restrictions.
Want to join us?
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