A patient centred approach

Between 6 000 and 8 000 rare diseases affect an estimated 30 million people in the European Union. An unfortunate feature of rare diseases and complex conditions is the scarcity and fragmentation of specialist knowledge, which is often not available in the patient’s region or country. Many patients therefore might not receive a satisfactory explanation for their symptoms, have delays to correct diagnosis or have access to the necessary knowledge on treatment options, rehabilitation and care.

In March 2011, a new Directive was adopted by the European Parliament and the Council of the European Union: Directive 2011/24 on the application of patients’ rights in cross-border healthcare.  The Directive sets out the conditions under which a patient may travel to another EU country to receive safe and high quality medical care and have the cost reimbursed by their own health insurance scheme. It also encourages cooperation between national healthcare systems.

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European Patient Advocacy Groups (ePAGs)

European Patient Advocacy Groups (ePAGs) bring together rare disease patient advocates who are actively involved in the work of the European Reference Networks. Each ePAG has a number of ‘ePAG advocates’, who represent their disease area in the ERN and the interests of the wider patient community.

The SKIN ePAG is the ePAG advocate group of the ERN-Skin. Each member is a representative of a patient organisation. Within the ERN-Skin, ePag advocates are present in each thematic and transversal group and play a key role in governance.

ePAG advocates’ contribution:

  • They ensure that ERNs remain truly patient-centric, which is central to the achievement of the ERNs main goal: improving the quality of the care that patients receive and health outcomes.
  • They hold the unique knowledge or personal experience of a specific disease, and can convey the needs and challenges of living with this disease into network discussions, decisions and activities.
  • They also bring their complementary skills and experiences outside the medical field (legal, IT, training, communication, etc.) that can enrich network discussions and offer new and alternative perspectives.
  • They have a stake in every stage of the healthcare and research pathways, from diagnosis, care and treatment through follow-up and from early research through to orphan drug authorisation, and as such they are in a privilege position to have a holistic view of the whole process.