Chadzicharalabous Stratis
President of Hellenic Retina Society
Yiannis Liaros
Co-founder of “karkinaki.gr”, the first website in Greece about childhood cancer
Dimitris Kontopidis
President of the Panhellenic Cystic Fibrosis Association
Coordinator:
Elina Miaouli, Rare Disease Activist, Founder of the website “The World of Rare Diseases”

In Europe, a disease is considered to be rare when it affects 1 person per 2,000. However, the number of patients varies from disease to disease, and most of the patients suffer from disorders affecting only 1 in 100,000 people or less. To date, six to seven thousand rare diseases have been discovered, which may affect 30 million European Union citizens, and approximately one million people in Greece. These disorders are serious, often chronic, progressive and life-threatening. Those affected by rare diseases all face similar difficulties in their quest for a diagnosis, relevant information and proper direction towards qualified professionals. Specific issues are equally raised regarding access to quality health care, overall social and medical support, effective liaison between hospitals and general practices, as well as professional and social integration and independence. All of these factors add to the isolation of being part of a small patient group whose health care needs are often unmet. That is why there is still much more to be done, in order to ensure that each person suffering from a rare disease gets the support she or he needs, that all patients have access to high quality care, including diagnostics, treatments, habilitation for those living with the disease and, if possible, effective orphan drugs.

Organisation: The World of Rare Diseases