PATIENTS COMMITTEE

 

 Helping patients and families

Patients are represented in TransplantChild through the Patients Sub-committee, which is constituted by a representative named by the Patients Associations and Advocated Organisations collaborating with the ERN. The Chair of the Patient Committee is part of the Board of the Network for:

  • Inform about activities and relevant outcomes of the Patients Committee
  • Provide patients and families point of view
  • Suggest relevant issues that can be carried out by the ERN

Identify and suggest expert centres or other healthcare professionals that should join the ERN

TransplantChild Patients Committee is composed by:

  • Members: a representative of each patients association or advocacy group related to paediatric transplantation in Europe. All organisations are invited to join.
  • Chair: the committee members shall appoint one of the members for a period of two years.
  • Coordinator:  one member of the EOC acts as Coordinator to facilitate the development of SubCommittee proposals as well as to ensure consistency in the development of the Network.

Patients Committee responsabilities:

The Patients Committee is aimed at providing the framework to take into consideration patients and their families’ voice and experience, by:

  • Proposing, to the Executive Operating Committee, relevant issues to ensure patient involvement in the development of the Network in aspects such as:
    • Patient information, education and training activities for patients and families, good practice guidelines, treatment and care pathways for professional advice.
    • Inform about patients needs and gaps in order to prioritise if possible research in these areas.
    • Ethical issues on the application of personal data law, compliance of informed consent and patients ´rights.
  • Attending to the Working Groups meetings in which the patients representatives participate
  • Supporting the network with the dissemination of information and communication to the wider European patient community.

 

Download the SOP

TransplantChild strives to increase life expectancy and quality of life of paediatric patients requiring a solid organ or hematopoietic progenitor transplantation and their families, and will provide added value  to patients,  families and patients’ organizations, by:

  • Involving and giving a voice to families and patients’ organizations and increasing social awareness;
  • Facilitating awareness, self-control, training and participation of the patient/family in the care of their condition;
  • Making available the latest knowledge in medical, pharmacological and therapeutic advances;
  • Providing psychosocial support to children during school age and in their transition to adulthood;
  • Providing information about available clinical trials and research projects;
  • Reducing hospitalisation time and the use of complex and long-lasting treatments and humanising paediatric care in the hospital units.

In relation to the implementation of Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare, ERN TransplantChild offers the following services and information:

  • Expert virtual clinical advice on the entire transplant process through the Clinical Patient Management System (CPMS).  Organ access and allocation are not included in the network’s services.

ERNs are not directly accessible to individual patients/families. However, with the patients’ consent and in accordance with the rules of their national health system, patient case can be referred to the centre/s involved in TransplanChild in their country by their local hospital.

For additional information about cross-border care for patients when travelling/living in another EU country, visit “Your Europe” website: https://europa.eu/youreurope/citizens/health/index_en.htm

 

 

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