Rare diseases awareness campaign launched

For the seventh consecutive year, Al Jawhara Centre for Molecular Medicine, affiliated to the Arabian Gulf University (AGU), is launching a national awareness campaign on rare diseases. This is in conjunction with World Rare Disease Day to be observed on February 28 under the slogan ‘Show you are, show you care’. Diseases are classified as rare whenever they affect less than one in every 2,000 or more people. There are 100 million individuals in the world affected with a rare disease and nearly 15 million in the Arab world. Most rare diseases are genetic, and accompany the patient for a lifetime, although the effects of some may only manifest at an older age. Dr Cristina Skrypnyk, Medical Genetics Consultant at Al Jawhara Centre and Head of the Organising Committee said: “All activities of this year campaign are dedicated to increase the awareness about rare diseases patients, their need for medical and social support, help and tolerance. We aim to increase the education about rare disorders and to create a solid bridge in between the medical, academic and social community.” Dr Skrypnyk thanked AGU for the great continues support of this awareness campaign and is looking forward to develop a national plan for rare disorders in the Kingdom of Bahrain. A special event dedicated for families and patients will be held in Aljawhara centre on 27 February, aiming to share their experiences and provide support. A movie and lectures about rare disorders impacts into daily life of the society will be presented in main universities in Bahrain. A rare disorders day booth will be active on 28 of February during the second Pearl Paediatric Conference held in Bahrain and organised by Arabian Gulf University. A flyer and informative leaflets about inheritance types and genetic testing will be distributed in all events venues.