For the first time in Cyprus, patients with rare disorders unite their energies and voices to establish the Cyprus Alliance for Rare Disorders.
Owing to the close collaboration and initiative of the Cypriot organizations listed below which represent patients with rare disorders, and after almost two years of intensive actions and deliberations, the alliance of organizations representing patients with rare disorders was founded by the following:
- Thalassaemia International Federation (TIF)
- Muscular Dystrophy Association Cyprus (MDA Cyprus)
- Adult Congenital Heart Defects Association Cyprus (ΑCHDAC)
- Pancyprian Anti-anaemia Association (PAA)
- Cyprus Myasthenia Gravis Association
- Cyprus Primary Association and Friends - Immunodeficiency
- Cyprus Society for the protection of spastic and handicapped children (ΕLΕPAP)
- Parents Society of the centre for the protection of spastic and handicapped Children.
Principal goals of the Alliance:
- To 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.
- To lend support to 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.
- To provide support and continuous education to the patients and their families concerning the latest developments in medicine and research.
- To raise awareness regarding rare disorders in the Cypriot society.
C.A.R.D. has embarked on a public awareness and educational programme in 2011 with two major events so far.
Rare Disease Day 2011 – 28th February 2011
On the 28th February Rare Disease Day was celebrated. The event was first organised by EURORDIS (European Rare Disease Organisation) in 2008, and is now widely celebrated in Europe. Since 2009, new partners from the US, China, Australia, Taiwan and Latin America have joined in the action. This year, the spotlight was on “Rare Diseases and Health Inequalities” and the theme was “Rare but equal”. More specifically, in 2011, Rare Disease Day advocated for equal access for rare disease patients to health care and social services, to basic social rights such as health, education, employment, and housing, and to orphan drugs and treatments.
In Cyprus, for the occasion, C.A.R.D. (Cyprus Alliance for Rare Disorders) organised a press conference in the presence of the Minister of Health of Cyprus, as well as medical experts and patients/parents, and the mass media. With this event, C.A.R.D. and TIF participated along with alliances from a number of other countries in a campaign for raising awareness on rare diseases, including thalassaemia and sickle cell disease.
For more information on Rare Disease Day activities in 2011 please visit http://www.rarediseaseday.org/ .
1st National Scientific Conference for Rare Disorders, co-organised by C.A.R.D. and TIF, in Cyprus – March 2011
In the context of the Cyprus Alliance for Rare Disorders’ strategic plan for 2011, the first national scientific conference for rare diseases was organised in Nicosia, Cyprus, on 19th and 20th March 2011. The event attracted many members of the medical and the patients/parents community of Cyprus, and benefitted from the presence of officials of the ministry of health of Cyprus, and representatives from European health organisations, such as the European Organisation of Rare Diseases (EURORDIS). The latter sent a member of its Board to give a speech on their behalf – Prof Mirando Mrsic, a haematologist with great knowledge and expertise in his own country, Croatia. The conference was very well attended and received excellent comments. We believe that the event was very successful in disseminating knowledge and spreading awareness about rare diseases in general, and thalassaemia in particular, in the country.
Representatives of C.A.R.D. have also participated in several interviews focused on the issue of rare disorders in Cyprus thus highlighting the necessity of a national programme for rare disorders.
C.A.R.D. is an active member of Eurordis, the European Organisation for Rare Disorders, participating frequently in membership meetings and educational workshops.
For more information about C.A.R.D. and its activities please contact us at card@thalassaemia.org.cy
