• Who we currently are (and what centers are currently not and should be in the network)
• To analyse the number and distribution of existing centers and transplantation programs
• To identify the equity in access to transplantation for pediatric candidates across Europe, and
• Extend the network to all EU member states and thus provide access to the network to all patients and families across the EU.
The Health Care working group through of multidisciplinary collaboration group decided to define the EU map of the paediatric transplantation activities, including both solid organ and hematopoietic stem cell transplants.
To achieve this goal, we kindly request the collaboration of all European National Agencies to provide paediatric donation and transplant information between the years 2012-2016. Information on transplanted patients under the age of 18 was collected including:
- The number of pediatric solid organ transplantations by type of organ (kidney, liver, lung, heart, and intestinal/multivisceral).
- The number of pediatric hematopoietic stem cell transplantations.
- The number of transplants (both solid organ and hematopoietic) per Hospitals of each country.
Bulgarian Executive Agency for Transplantation
2. Czech Republic
Prof.MUDr. Miloš Adamec, CSc
Koordinační středisko transplantací
Mrs. VIRGE PALL, MD
Director of Transplantation Centre
Tartu University Hospital
Hellenic Transplant Organization
Εθνικός Οργανισμός Μεταμοσχεύσεων
National Organ Donor Co-Ordinator
Organ Donation and Transplant Ireland
Paola Di Ciaccio
Head of Foreign Affairs Division
Italian National Transplant Centre
Italian National Institute of Health
Transplant Coordination Department
National Transplant Bureau
Under the Ministry of Health of the Republic Lithuania
Centrum Organizacyjno-Koordynacyjne do Spraw Transplantacji
Assessora da Coordenação Nacional da Transplantação
Serviços Centrais - Instituto Português de Sangue e da Transplantação, IP
Organización Nacional de Trasplantes
Ministerio de Sanidad, Consumo y Bienestar Social
Daniel Kuba, Magdaléna Krátka
Bratislava, Slovenská republika
Zavod RS za presaditve organov in tkiv Slovenija-transplant
Ljubljana - Slovenija
13. United Kingdom
ODT Statistical Enquiries – NHS -UK
14. Eurotransplant Austria, Belgium, Croatia, Denmark, Germany, Hungary, Netherlands, Switzerland
Jacob de Boer, MD
Medical Staff ET
Eurotransplant International Foundation
Organtransplantation - Germany
15. Scandiatransplant Denmark, Finland, Iceland, Norway, Sweden Ilse Duus Weinreich
Clinical Data and Office Manager
Aarhus University Hospital, Skejby
ERN BOND European Reference Network on bone disorders
ERN CRANIO European Reference Network on craniofacial anomalies and ear, nose and throat
Endo-ERN European Reference Network on endocrine conditions
ERN EpiCARE European Reference Network on epilepsies
ERKNet European Reference Network on kidney diseases
ERN-RND European Reference Network on neurological diseases
ERNICA European Reference Network on inherited and congenital anomalies
ERN LUNG European Reference Network on respiratory diseases
ERN Skin European Reference Network on skin disorders
ERN EURACAN European Reference Network on adult cancers (solid tumours)
ERN EuroBloodNet European Reference Network on haematological diseases
ERN eUROGEN European Reference Network on urogenital diseases and conditions
ERN EURO-NMD European Reference Network on neuromuscular diseases
ERN EYE European Reference Network on eye diseases
ERN GENTURIS European Reference Network on genetic tumour risk syndromes
ERN GUARD-HEART European Reference Network on diseases of the heart
ERN ITHACA European Reference Network on congenital malformations and rare intellectual disability
MetabERN European Reference Network on hereditary metabolic disorders
ERN PaedCan European Reference Network on paediatric cancer (haemato-oncology)
ERN RARE-LIVER European Reference Network on hepatological diseases
ERN ReCONNET European Reference Network on connective tissue and musculoskeletal diseases
ERN RITA European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases
ERN TRANSPLANT-CHILD European Reference Network on Transplantation in Children
VASCERN European Reference Network on Rare Multisystemic Vascular Diseases
ERNs will provide for the first time a unique opportunity to work together in healthcare. The main goal is to support cooperation in healthcare where expertise is scarce and to facilitate access to high-quality diagnosis and medical care including the European added value by working cross border in this field. Proposed networks have to define how they want to communicate with each other (i.e. access to shared communication tools and assets to support e-health and teleconsultations) and what services they will offer such as sharing diagnostic tools etc. between collaborators within a single ERN.
end-stage disease with a more sustainable chronic disease state and as such has profound clinical and psychosocial consequences, even more challenging in children, with more impact on the growing process.
Is a cross-cutting approach to supports common areas in different types of transplants as immunosuppression, rejection, tolerance, risk of infection and psychosocial wellbeing.
Transplanted children shift their primary disease to lifelong chronic condition or `disease´, mostly imposed by the necessary treatment regimens to avoid rejection.
This network is initially integrated for 18 HCP from 11 Members States with highly qualified multiprofesional teams and proven experience in PT.