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‘Together we are stronger’ campaign commences on Rare Disease Day, 29th February, a ‘rare day’
Eighty per cent of rare diseases are genetic, Tawam set to open dedicated Metabolic Genetic Center by end of year
Fifty per cent of rare disease cases affect children, Tawam partners with TV Chef Osama El Sayed to educate parents of patients affected with rare disease on importance of nutrition
Tawam Hospital, in affiliation with Johns Hopkins Medicine, has launched an important campaign to raise awareness of rare diseases and their impact on the lives of millions of people worldwide affected by them. This Wednesday 29th February, a ‘rare day’ that comes around only every four years, marks the second Rare Disease Day. First was held in 2008, the last leap year, Rare Disease Day primarily targets the general public, but is also designed for patients and patient representatives, with a genuine interest in rare diseases.
In 2012 Rare Disease Day will put the spotlight on the value of ‘Solidarity’, which characterizes the rare disease patient movement; hence the new Tawam campaign, ‘Together we are Stronger’. Tawam’s ‘Together we are Stronger’ campaign is inspired by the Rare Disease Day 2012’s theme of solidarity. ‘Together we are Stronger’ will focus on the need for mutual support in treating rare diseases, of which there are an estimated 6000-8000, with some 50 per cent affecting children. Roughly 80 per cent are accredited to genetic causes.
Dr. Fatima Al Jasmi, Tawam Hospital, said, “Through the ‘Together we are Stronger’ rare disease campaign, Tawam aims to not only share the concept of rare diseases in the community and increase awareness about different rare diseases, but also to support patients and provide them with the information that they require”.
Tawam has been making advances in the areas of genetic and metabolic conditions, which are behind the majority of rare diseases. In 2011, Tawam received almost 2000 visits to the existing genetic and metabolic clinic, with numbers set to increase with the opening of the new center. The hospital is due to open a new, dedicated, Metabolic Genetic Center by the year end.
Dr. Fatima Al Jasmi added, “At Tawam we are very much looking forward to the opening of the new Metabolic Genetics Center, which will provide a genetic and metabolic clinic with specialized genetic metabolic dietician. The new Center with its extra resources and cutting-edge technology will also provide counselling for couples at risk”.
Additionally, Tawam Hospital has demonstrated its commitment to rare disease in other ways over recent months, not least by organizing a culinary workshop to educate patients and their families on innovative recipes for children diagnosed with rare diseases. Celebrated Arab TV chef, Chef Osama El Sayed, who has an audience of over one million viewers, led the course, which took into account the specific dietary and nutritional requirements of the patients. Chef Osama and his show ‘Ma Osama Atyab’ or ‘It’s More Delicious with Osama’ airs live daily on Dubai TV. This February 29th Chef Osama will host a group of children affected by rare disease, with their parents. He will offer ideas and tips to help them follow the necessarily strict diets set by doctors, without them feeling bored or deprived.
Dr. Fatima Al Jasmi thanked Chef Osama El Sayed saying, “Chef’s Osama’s participation is a great addition to our campaign. He is considered one of the most important chefs of the Arab world and we are grateful that he has used his influence for such an important cause of educating adults and young people on the importance of good nutrition, which is consistent with our key objectives for the campaign”.
Tawam Hospital is part of the SEHA Health System and is owned and operated by SEHA, which is responsible for the curative activities of all the public hospitals and clinics in the Emirate of Abu Dhabi.
‘Ma Osama Atyab’ ("It’s More Delicious with Osama) airs daily, live on Dubai TV from Sunday to Thursday at 1pm UAE time. Watch episodes by visiting the following link http://dubiamedia.ae For more recipes please visit Chef Osama www.chefosama.com
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