A TIF Initiative in Cyprus
The creation of national networks of patients associations was suggested by the European Organisation for Rare Diseases (EURORDIS) in 2009. The national networks are expected to collaborate in a "Network of European Rare Disease Federations" in an effort to share information and experiences relevant to common activities and issues, to discuss common activities with Eurordis, and to enhance their voice at a European level. In Europe, thalassaemia is a rare disease facing the same problems in health care delivery as other rare disorders.
TIF initiated a partnership in 2009 with a number of associations representing rare diseases to create the first national rare disease platform: the Cyprus Rare Disease Alliance. Seven disease-specific associations joined as founding members of the Alliance, which was legally registered on 2nd June 2010. Its first activity as legal entity was to join a committee appointed by the Ministry of Health with the purpose of advising the Ministry on the development of a national plan for rare diseases. A press conference is programmed for the 23rd of September 2010, and the first national conference on rare diseases with contribution from invited international experts is scheduled for April 2011. Being legally registered, the Cyprus Rare Disease Alliance will become the Cyprus national representative to Eurordis.
THE CYPRUS ALLIANCE FOR RARE DISORDERS, an alliance of patients organisations, was founded in June 2010 with the aim of uniting the voices of all patients with rare diseases at a national level.
Principal goals of the Alliance are the following:
- Lend support to the national rare disorders programme announced recently by the Ministry of Health, which falls within the European Union's health programme and especially the prioritised promotion of rare disorders
- Support the efforts of rare disorders patients for improvement of prevention, medical treatment, as well as social and other services related to each of the rare disorders (when known and diagnosed). Ultimate goal is the betterment of health and quality of life for every patient with rare disorders
- Provide support and continuous education to the patients and their families concerning the latest developments in medicine and research
- Raise awareness regarding rare disorders in the Cypriot society.
A press conference is programmed for the 23rd of September 2010. Being legally registered, the Cyprus Rare Disease Alliance will become the Cyprus national representative to health organisations and institutions at European and International level.
