Contact Email: coordination@transplantchild.com

ERN TransplantChild Transplantation in Children

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TransplantChild will be support for patients to receive an accurate diagnosis and advice on the best treatment and support for their specific condition

TransplantChild

Overview

EU citizens have the right to access healthcare in any EU country and to be reimbursed for care abroad by their home country.

Directive 2011/24/EU on patients’ rights in cross-border healthcare sets out the conditions under which a patient may travel to another EU country to receive medical care and reimbursement. It covers healthcare costs, as well as the prescription and delivery of medications and medical devices.

Key elements

With health policies and systems increasingly interconnected, the Directive makes it easier to access:

Information on available healthcare in other European countries
Alternative healthcare options, and/or specialised treatment abroad.

The provisions strike the right balance between maintaining the sustainability of health systems, while protecting patients' right to seek treatment outside their home country.

The Directive:

Creates a network of National Contact Points to provide clear, accurate information on cross-border healthcare
Creates EU rules on a minimum list of elements to be included in a medical prescription taken from one EU country to another (cross-border prescription)
Encourages further development of European Reference Networks of medical expertise, broadening cooperation between EU countries, with added benefits to health technology assessments and e-health.

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.