About RARE-e-CONNECT

Victoria Antoniadou

Victoria Antoniadou is PostDoctoral Researcher at the Cyprus Alliance for Rare Disorders (CARD) since January 2019. Her work at CARD focuses on the development of the RARE-e-CONNECT.eu platform for People with Rare Disorders and Healthcare Professionals. 

From 2017 to 2019, she was Educational Scientist at the Thalassaemia International Federation working on the Thal e-Course for patients and families, and the e-ThalED programme for globally dispersed physicians treating thalassaemia. From 2015 to 2017, she worked as medical interpreter/translator in State hospitals for the purposes of St George's Programme of the University of Nicosia Medical School in the departments of psychiatry, paediatrics, internal medicine and surgery. She also worked as Scientific Collaborator at the European University of Cyprus teaching and training for knowledge development, skills and technology-mediated instruction in education.

As a researcher, Victoria has worked in funded projects on the use of ‘learning technologies’ and the production of outcome measurements to document impact and benefit. 

Victoria holds a PhD from the Universitat Autonoma de Barcelona, specialising in telecollaboration for learning and professional development. At CARD, Victoria transfers successful, evidence-based pedagogical practices and research skills to the field of health for healthcare improvement in Cyprus.

She speaks Greek, English, Spanish and French.

Publications 
Email Victoria at This email address is being protected from spambots. You need JavaScript enabled to view it. 

Cyprus Alliance for Rare Disorders

The Cyprus Alliance for Rare Disorders (CARD) was founded in 2010 to support the needs of approximately 60,000 patients with Rare Disorders living in Cyprus.  CARD’s mission is to ensure that these people are empowered to live a decent and an all-in-all quality life, through active and meaningful participation in promoting existing and developing new health policies for rare diseases at a national, European and international level.

CARD members are both patient associations and individuals who are living with a rare disease but are not part of an association because they are individual cases. CARD establishment results from the need for collective support to patient demands and problem resolution. CARD currently counts 20 member associations and more than 250 individual patients.

CARD works in the forefront of:

  • Raising awareness about RD, patient rights and their better service in the newly established national health system via campaigns, info days, press releases, press conferences, online and social networking venues
  • Creation of an experts’ network of RD specialists from Cyprus and abroad
  • Creation and participation in RD-related committees as these are held in the Ministry of Labour, Welfare and Social Insurance

Nationally, the CARD is an official partner of the Ministry of Health for the purposes of the integration of the European Reference Networks (ERNs) into the national health system. Via this collaboration, CARD is tasked with informing and guiding Cyprus-based patients and health professionals about ERN-related matters and expertise, as well as to the services the MOH provides with regard to cross-border healthcare. CARD also holds active collaboration with the Ministry of Labour and Social Security and other stakeholders on RD-related matters, the national programme for RD, cross-border healthcare etc. Internationally, CARD is an active and official full member of the European Organisation of Rare Diseases (EURORDIS), the Cyprus Federation of Patients’ Associations, the Active Citizenship Network, the International Alliance of Patients Organizations (IAPO). 

With  the RARE-e-CONNECT platform, CARD is expanding its operations through the development of a full-fledged sustainable platform to support healthcare professionals’ and patients’ knowledge construction on RD by sourcing collective experience from Cyprus, Europe and other countries.

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Email CARD at This email address is being protected from spambots. You need JavaScript enabled to view it. 

Adamos Hadjipanayis

Dr Adamos Hadjipanayis is Paediatrician and Associate Professor at the European University of Cyprus. He is also Director of the Paediatric Clinic of the Larnaca General Hospital and Medical Director of the Larnaca General Hospital.

He is currently working on a series of national and European research programs, such as "Use and abuse of antibiotics in upper respiratory infections in children", "Houses and smoke-free cars" and "Quality indoor and outdoor air in schools". He was the Coordinator of the EUC Horizon 2020 programme titled "Assessment of Child Health Models".

He has published a large number of scientific articles and has given lectures at many international and national scientific conferences.

He has published a series of books for parents, such as the book "Paediatrics for All" (In Greek). An important achievement is the book titled “European Mastercourse in Paediatrics” intended for paediatricians in Europe; Dr Hadjipanayis is the author and editor of the book.

Since December 2018, he has been the President of the European Academy of Paediatrics.

He represents the European Academy of Paediatrics in many international organizations such as the European Centre for Disease Prevention and Control (ECDC), the European Medicines Agency (EMA), etc.

Publications

Email Adamos at This email address is being protected from spambots. You need JavaScript enabled to view it.