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 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. 

Download here the presentation of the Common Unmet Needs within the Patient Community developed by our ePAG community for the European Conference on Rare Diseases 2020:

Common Unmet Needs within the Patient Community


Patient working group and advocates

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.

This group enables representatives to work together on common issues: they are the voice of patients, produce deliverables and are involved in all EpiCARE activities.

The ePAG have two Chairs who sit on the EpiCare Steering Committee as well as several advocate members. For more information you can contact us at

Find who they are!

ePAG Coordinator – CHAIR

Deputy Coordinator – co-CHAIR

Allison Watson

Ring20 Research and Support UK CEO

United Kingdom


Emma Nott

Hope for Hypothalamic Hamartomas UK

United Kingdom

ePAG Advocates

Rosaria Vavassori

IAHCRC International Consortium, AHC18+ e.V. Association


Torie Robinson

Epilepsy sparks

United Kingdom

Monica Lucente

Associazione Italiana Glut1 Onlus


Carol-Anne Partridge


United Kingdom

Barbara Nicol

Lennox-Gastaut, Purple Day Spain, member of Madrid Epilepsy Association.


Anita Noordhoff


The Netherlands

Katia / Ennio Santoro

Lennox Gastaut


Anne Sophie Hallet

Présidente d’Alliance Syndrome de Dravet 


Fabrizio Mistretta

Insieme per la Ricerca PCDH19 Onlus


Learn more about EpiCARE Patient community….

and their actions….

Join our Community

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

Our goal is to truly represent the wider patient voice of all rare and complex epilepsies across Europe: 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 and that your rare disease is listed within the 130 rare and complex epilepsies currently supported within EpiCARE.

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 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.