European Reference Networks (ERNs) for patient benefit 

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.

By consolidating knowledge and expertise scattered across countries, the ERNs will give healthcare providers access to a much larger pool of expertise, therefore resulting in a more accurate diagnosis for the patient with advice on the best treatment available for their specific condition.

EpiCARE is a network of 28 specialist health centres in 13 European countries with expertise in rare and complex epilepsies. EpiCARE centres aim to enhance patient care by providing access to cutting edge clinical knowledge and diagnosis as well as a high standard of care provision by using e-tools and e-consultancy through regular, virtual multi-disciplinary meetings. This way it is the medical knowledge and expertise that travel rather than the patients, who have the comfort of staying in their supportive home environments.

Patient Pathway for EpiCARE 

Patients suffering from rare and complex epilepsies have access to the full spectrum of the diagnostic and therapeutic options via the nearest national participating epilepsy centre. You can find the list of EpiCARE centres here. If more specialised expertise is required, the members of one participating centre will collaborate with another centre displaying the required specific expertise and together, they will decide on the best and most comfortable way for the patient to proceed with diagnostic and therapeutic procedures.

To review a patient’s diagnosis and treatment, EpiCARE centres will convene a virtual advisory board of medical specialists across different disciplines, using a dedicated IT platform called Clinical Patient Management System (CPMS) as well as virtual meetings via WebEx. At this time the patient will not be asked to participate in these virtual meetings as your medical specialist will do so on your behalf.

Information on Cross-Border Healthcare

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.

The links below provide further information about cross-border healthcare.

EpiCARE patient group

The EpiCARE Patient Group (ePAG, European Patient Advocacy Group) gathers Patient representatives and Patient Organisations in rare and complex epilepsies who will ensure that patient voice is heard and implemented throughout the ERN development process. Patient organisations can become ePAG member organisations and patients can become ePAG representatives.

If you are interested in becoming a member organization or an EPAG representative then please contact us via email. For further information, please consult the EURORDIS website.

The Patient Group enables Patient representatives to work together on common issues and deliverables, as well as being involved in all EpiCARE activities.

The Patient Group has two Chairs, ePAG representatives and ePAG members.

ePAG Coordinator

Isabella Brambilla

Deputy Coordinator

Allison Watson

Secretary

Emma Nott

ePAG Advocates

Rosaria Vavassori

IAHCRC

Rosaria Vavassori

Torie Robinson

Epilepsy sparks

Torie Robinson

Monica Lucente

Sarka Kanova

EPISTOP, Czech Rebublic

Sarka Kanova

Carol-Anne Partridge

CDKL5 – UK

Carol-Anne Partridge

Barbara Nicol

Purple Day Spain and also a member of the Board in Epilepsia España (Epilepsy Spain). Lennox Gastaut – Sturge Weber, Landau Kleffner, Dravet, Glut 1

Barbara Nicol

Myra De Groot

Dravet Nederlan/Belgium

Myra De Groot

Anita Noordhoff

KCNT1 / NL

Anita Noordhoff

Nuria Pombo

ePAG Representatives

Katia / Ennio Santoro

Lennox Gastaut / Italy

Katia / Ennio Santoro

Association Paratonnerre

France

Association Paratonnerre

Nathalie Coque

Anne Sophie Hallet

Fabrizio Mistretta

Marie Emmery

Judette

Marie Emmery

Growing Our Community

Two and a half years since the ERN’s were created, it is now time to expand our EPAG Patient Community so we can truly represent the wider patient voice of all rare and complex epilepsies across Europe and this is where you come in…

Would you like to be regularly informed about the work of EpiCARE? Do you want to be consulted on unmet patient needs and/or be willing to be a patient representative for your rare disease? Would you participate in surveys to tell us more about what you want and need?

If the answer is YES, then sign up to join our EPAG Patient Community TODAY!

You can join through EURORDIS here: online registration portal it’s quick and simple.

The key pre-requisites are that you must be able to speak fluent English (spoken and written) and that your rare disease is listed within the 130 rare and complex epilepsies currently supported within EpiCARE.