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Patient Advocacy Committee

The Committee is composed of patient advocates of EU patient organisations representing patients with haematological diseases, and national patient associations as well as a representative of the EBMT Nurses Group from the country where the upcoming Annual Meeting is taking place to participate in the organisation of Patient, Family and Donor Day.

Patient Advocacy Committee Team

Committee Objectives

  • Collaborating and providing advice to other EBMT Committees and Working Parties on patient needs
  • Supporting EBMT to provide relevant, high quality, best practice information about all aspects of transplantation of haematopoietic stem cells and cell therapies to patients
  • Increasing the awareness of international patients, family members and donors to attend the EBMT Patient, Family and Donor Day at the Annual Meeting and access information on the website
  • Encouraging national patient support organisations and patient advocacy groups to provide knowledge locally
  • Promote collaboration between patient organisations, patient advocates, professionals including registries
  • Promote Donor-related aspects

Activities

  • Working with other EBMT Committees and Working Parties
  • Supporting EBMT when there is a need to advocate for and advise on patient relevant issues
  • Setting the strategy and key topics of interest for the Patient, Family, Donor Day Program at the EBMT Annual Meeting
  • Including a Patient Advocacy Track at the EBMT Annual Meeting, helping to engage and increase awareness of the unmet needs of patients and transplant teams to political decision makers
  • Providing advice and recommendations on how to maintain the Patient, Family, Donor section of the EBMT website to ensure it reflects up to date, best practice information on all aspects of Stem Cell transplantation and cell therapies
  • Providing a pan-European platform for patient support and advocacy groups
  • Maintaining the Network with patient support and patient advocacy organizations & associations

Strategy

  • The overall strategy is to increase the awareness and representation of the importance of patients’, families’ and donors’ interests among the EBMT society by creating a close, collaborative working relationship with the EBMT Board, Committees and Working Parties.
  • To encourage better communication and understanding between patients, families, donors and the wide range of transplant professionals including physicians, nurses, psycho-social workers, psycho-oncologists, pharmacists etc.
  • The members meet in person 2-3 times a year, once 6 months before the EBMT Annual Meeting to discuss strategy, main activities and the PFD Day program. Other meetings are held on a regular basis during the year by teleconferences or if needed.

Committee Members

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