The Cyprus Alliance for Rare Disorders (C.A.R.D.) is a non-governmental, non-profit organisation t founded in Nicosia, Cyprus in June 2010. Its founding members include the Cyprus Muscular Dystrophy Association, Cyprus Adult Congenital Heart Defects Association- Cyprus, Cyprus Association for the Protection of Spastic and Handicapped Children, Parents Association of Spastic and Handicapped Children, Cyprus Primary Immunodeficiency Association and Friends, the Thalassaemia International Federation, Myasthenia Gravis Association, and Cyprus Anti-Anaemia Association,.
C.A.R.D. aims to provide a dynamic and unified voice to the approximately 60,000 rare disorder patients who live in Cyprus. In representing these patients, C.A.R.D. works closely with the Cypriot Ministry of Health, the Cyprus Institute of Neurology and Genetics, patient associations and the medical community in order to improve patient quality of life. To achieve this, C.A.R.D. provides the latest information on research developments to the medical community as well as endorses a public awareness programme aimed at informing health authorities and the wider Cypriot society about the challenges rare disorder patients face. The ultimate goal is the implementation of a national programme for rare disorders.
In line with these goals, C.A.R.D. is organising the 1st National Scientific Conference on Rare Disorders due to take place on the 19th and 20th March 2011 at the Cyprus Institute of Neurology and Genetics in Nicosia. The conference will be held under the auspices of the Cyprus Ministry of Health, Cyprus Rheumatology Society, the Neurology Society of Cyprus and the Cyprus Human Genetics Society.
The event will adopt the slogan proposed by EURORDIS, ‘Rare but Equal’, and desires to raise and discuss issues of health inequality. The aspiration of the conference, furthermore, is to promote C.A.R.D.’s objectives, of which the most important is the continual provision of information and education of doctors and patients about new developments in areas concerning the prevention and clinical management of rare disorders. Furthermore, the conference will enable C.A.R.D. to make members of the public and national health authorities aware of the difficult and challenging struggle that rare disorder patients experience. To meet these objectives, medical experts on rare disorders, of national and international prestige, as well as high-ranking EU officials have been invited and will participate in the conference.
For more information on C.A.R.D. and our upcoming conference, please email us at card@thalassaemia.org.cy .
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If we were to compare the current data about the condition of the persons with Muscular Dystrophy in Kosovo with those of the last 20 years, we would notice that their economical, social, and health condition is very poor – all this resulting as a consequence of the post-war state.
In the future we will continue to advice, suggest and give help to persons with Muscular Dystrophy in Kosovo without hesitation. While in Kosovo there are many places for employment of people with Muscular Dystrophy, in our society there exists a prejudice that they cannot do these kinds of jobs.
The Association of Persons with Muscular Dystrophy in Kosovo residents of Prishtina, “Pal Lucaj” street, No. 40, needs financial help to begin a large campaign in order to change the current opinion of Kosovo about these people and together surpass this kind of discrimination. This by means of:
a) Informing the public by media about those kinds of workplaces where people with Muscular Dystrophy can be employed without the risk of showing inefficiency in their job.
b) Contacting with written and electronic media, arranging conferences for press, seminars and tribunes, with the purpose of persuading journalists to write more on the need of eliminating prejudices in the Kosovo opinion resulting with a greater need for integration of persons with a limited abilities. This awareness of opinion can be achieved only through a massive long campaign.
c) Making Medial pressure to local administrative institutions and international mechanisms so they seriously consider the problem and foresee obligated quote for employment of persons with Muscular Dystrophy into their legislation and mechanisms in Kosovo.
In its daily activities the Association is facing a great hindrance in the process of registering the new members. In Kosovo society there exists an immense prejudice about people with Muscular Dystrophy, remarkably in rural communities, regarding their abilities, incorporation, devotion and diseases in society.
Their families refuse to accept that they have a person with Muscular Dystrophy or with limited abilities inside their families, so they hide and separate them. Therefore, our Association thinks that the best way to fight this negative state is to contact directly with families where persons with Muscular Dystrophy live, and publish their true living life. In addition, we think to achieve this by an automobile which will tour through rural communities (faraway countries).
Inside of our Association board there are 4 people employed: 1 Albanian, which is also the president of Association, 1 Serbian local president of Graçanica, 1 Muslim, the manager of the office and 1 Ashkali is office assistant.
Volunteers are also included: 1 Neurologist, 1 Internist, 2 Pediatrician and 1 Cardiologist. All of them are contributing a lot in our activities in the Muscular Dystrophy Association of Kosovo.
President Association:
Email:gimi_mda@yahoo.com
Agim Vatovci
Str”Ardian Krasnici N:6/22-
10000 – Prishtina-Kosovo
Nr.telephon:038- 247- 721,044- 377- 377