European Reference Networks (ERNs) help patients with rare or low-prevalence complex diseases. These conditions usually require a multidisciplinary approach with several possible diagnoses, are often difficult to test and interpret and/or have a high risk of complications. For such cases, ERNs can bring the expertise that is often missing within a patient's region or your country, and help them find the necessary treatment.
 

Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Some key statistics on rare diseases:

• Over 300 million people around the world are living with a rare disease.
• There are over 6,000 identified rare diseases.
• 72% of rare diseases are genetic.
• 70% of genetic rare diseases start in childhood.

Mrs Sandra Beltrán has recently joined TransplantChild as Patient Representative for the ePAG Steering Committee. Mrs Beltrán is the mother of a liver transplanted child and has been collaborating with different patients associations. She has written a short presentation about herself, where she explains her motivation to join the network and what she will do to collaborate with the ERN.
 

ERN TransplantChild works to improve the quality of life of children and their families who are going through the process of transplantation. TransplantChild activities are aimed at improving the treatment of transplanted children, promoting research in the process of transplantation, creating education and training for both healthcare professionals and patients and families, developing guidelines for treatment at European level and ultimately improving the quality of life of these patients.
 

La Paz University Hospital, TransplantChild Coordinator Centre, is organizing the II Solidary Run for Paediatric Transplantation. It will take place on March 15th in Madrid. This event aims to make visible the importance of treatment and research in transplantation in children. Registration is already open!
 

Patient Reported Outcomes Measures (PROMs) are tools used to collect patients' health status directly from them. Patient Reported Experiences Measures (PREMs) are also tools used to collect patient experience in relation to the health care system. The objective of this project is to involve patients through strategies that allow transforming these subjective perspectives into evidence for decision making. ERN TransplantChild will use both measures together with the clinical data collected in the PaEdiatric Transplant European Registry (PETER).
 

Clinical Patient Management System (CPMS) is a tool developed by the European Commission to support members of the European Reference Networks in the diagnosis and treatment of rare diseases and complex procedures such as paediatric transplantation. This tool allows virtual consultations with experts from different European centres to discuss clinical cases. The goal is to move knowledge instead of the patient. ERN TransplantChild currently uses this tool making the most of the 18 member hospitals of the network that participate regularly.
 

Patients Associations from different European countries collaborate with TransplantChild in many different activities. Check these associations in our webpage.

 

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