PSSGP – UNIQUE SMILES has official action since February 2014. Our journey began when a group of mainly parents, friends and health professionals, all shared from their own perspective, their strong concerns about the huge needs that people with rare diseases face.
Although there are around 8000 rare diseases mentioned in the literature, those people and their families are facing similar problems, share similar experiences and aspirations: Like the need for timely and correct diagnosis. Often, the parents or the individuals who suffer from a rare disease go from doctor to doctor until they end up to someone who knows or can recommend a specialist. The need for expertise, global approach by multidisciplinary teams with central coordination not only in the field of health, but in education as well. We recognized the huge need to support those individuals and their families: The period up until the acceptance of the disease can be described as the “mourning period” and the parent has to cope with it all alone, since there is no psychological support by professionals.
Our journey as an association and our personal fermentation helped us realize that the needs of the people we represent will be met only if we work for the legal protection of the people with rare diseases and the upgrade of the existing clinics to a Reference Center for rare conditions for in patient and out patient care according to the criteria of the European Union Committee of Experts on Rare Diseases (EUCERD).
Our country has not progressed in the consolidation of rare diseases (RD). Therefore, at times and partially, a benefit policy is manifested for some diseases without integrating all the actions in a structured framework of the evaluation and treatment of patients with rare and usually incurable diseases.
Rare are the diseases that affect less than 1 out of 2000 people. According to the European Organization for Rare Diseases (EURORDIS), rare diseases are chronic, life threatening, cause great mental pain and disabilities, while 50% of them show the first symptoms during childhood. It is estimated that in the European Union there are over 30 million people suffering from one of the 8000 rare diseases.
In Cyprus, it is estimated that there are around 6000 patients with a rare disease. This means that in every family there is a UNIQUE SMILE!
We invite every friend, family member, health professional and of course the people who suffer from a rare disease to become a member because nature made them rare but we can make them strong!
Katia Kyriakou
Chairman
