Patients and Families


Helping patients with low-prevalence rare or complex diseases


The ERNs help patients with rare or low-prevalence complex diseases. A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5.000 and 8.000 of rare diseases affect the daily life of around 30 million people in the EU.

Low-prevalence and complex diseases are conditions that combine a number of factors or symptoms and which are not common. They 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, the ERNs can bring the expertise that is often missing within your region or your country. To read more click on the patient's flyer.


Patient's Flyer

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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 About Patients Subcommittee  EU added value of TransplantChild planned activities


Patients will be represented in the network by Representative of patients’ organisations. The representative of patients’ organisations acts 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. 


The Patients Subcommittee is composed of 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.


 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 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. 
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