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, to which you can be referred by your medical specialist. See here for the EpiCARE patient referral pathway.  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.

 

EpiCARE patient group

The EpiCARE Patient Working Group comprises ePAG (European Patient Advocacy Group) Patient Advocates who are either leaders in rare and complex epilepsy patient organisations from across Europe, or patients themselves.

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 Working Group has two Chairs who sit on the EpiCare Steering Committee and several supporting ePAG Patient Advocate members. For more information you can contact us at epag.epicare@gmail.com

ePAG Coordinator

Isabella Brambilla

Deputy Coordinator

Allison Watson

Secretary

Emma Nott

ePAG Advocates

Rosaria Vavassori

IAHCRC International Consortium, AHC18+ e.V. Association – Germany

Rosaria Vavassori

Torie Robinson

Epilepsy sparks

Torie Robinson

Monica Lucente

Carol-Anne Partridge

CDKL5 – UK

Carol-Anne Partridge

Barbara Nicol

Lennox-Gastaut, Purple Day Spain, member of Madrid Epilepsy Association. Contact with other rare epilepsy associations, Spain.

Barbara Nicol

Anita Noordhoff

KCNT1 / NL

Anita Noordhoff

Growing Our Community

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. 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.

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! Membership of ePAGS is open to all rare and complex epilepsy patient organisations based in the European Union.

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

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 nation healthcare systems.

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

ePAG Meetings

Jul
27
Mon
ePAG Meeting via WebEx C.E.T Time @ Online
Jul 27 @ 7:00 pm
Aug
24
Mon
ePAG Meeting via WebEx C.E.T Time @ Online
Aug 24 @ 2:00 pm
Sep
28
Mon
ePAG Meeting via WebEx C.E.T Time @ Online
Sep 28 @ 7:00 pm
Oct
26
Mon
ePAG Meeting via WebEx C.E.T Time @ Online
Oct 26 @ 2:00 pm
Nov
23
Mon
ePAG Meeting via WebEx C.E.T Time @ Online
Nov 23 @ 7:00 pm
Dec
28
Mon
ePAG Meeting via WebEx C.E.T Time @ Online
Dec 28 @ 2:00 pm