Patients and families

Representative of patients’ organisations

Patients will be represented in the network by Representative of patients’ organisations. The representative of patients’ organisations act as a full member of the board of the network in order to:

  • Report information and relevant results from the Patients Subcommittee.
  • Provide the point of view and information of patients and their families.
  • Provide advice on planning, assessment and evaluation of the ERN.
  • Identify and recommend expert centres and other healthcare professionals that should join the ERN, either as a full member or an affiliated partner. 


About Patients Subcommittee

The Patients Subcommittee is composed by a selection of representatives from different patients’ organisations. It is coordinated by one member of the EOC in order to ensure consistency in the development of the Network. One of the members shall be appointed as the chairperson by the rest of the Subcommittee for a period of two years.


All   patients´organisations   are  invited   to   participate   and   become   members   of   the  Patients Subcommittee. Patients´organisations shall inform the coordinating centre in writing the name and contact  details  of  two  representatives  in  order  to  ensure  the  attendance  of  at  least  one representative to the meetings. Only officially nominated representatives are allowed to attend and participate in meetings.


EU added value of TransplantChild planned activities

As a result of the paediatric transplantation network activities, will strive 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  in patients/families/patients’ organizations, by:

  • Involving and giving a voice to families and patients’ organizations and increasing society 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 psycho-social 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.