Wednesday 20 February 2008

Mary with Mads & Marie for Rare Disorders Day

Photos © Steen Brogaard

Crown Princess Mary met with Marie and Mads at Amalienborg as part of the making of a TV documentary by TV2 made for Rare Disorders Denmark and the promotion of a new special day in the calendar. The photos were taken on 14 January 2008 by Steen Brogaard during the making of TV2's short documentary describing the daily life of children with rare diseases and the children's meeting with Crown Princess Mary.

Crown Princess Mary is the patron for Rare Disorders Denmark and met Marie the last time she attended an event for the organisation. The president of Rare Disorders Denmark Torben Grønnebæk and the director Lene Jensen were the two who represented the organisation at Crown Princess Mary's New Year reception for her patronages on January 10 at Amalienborg. The Rare Disorders Day in Denmark will be marked by a conference for professionals and patients' representatives, a 'rare march for very special people' to go from the conference centre to the city square at Copenhagen's Town Hall where there will be an advocacy event followed by an award to a person or an organisation for a significant contribution to support improvements dealing with rare disorders.

The European Union is currently evaluating EU health policies in relation to rare disorders and is a part of a more concerted world wide effort to address the problems of management and research into these disorders as a matter of public health. This new Rare Disorders Day is a European Union initiative. Rare disorders are genetic diseases but can also be from environmental exposures during pregnancy or later in life, often in combination with genetic susceptibility. They can be very different in severity and symptoms and sufferers usually have a reduced life expectancy. Many of the disorders are complex, degenerative and chronically debilitating, however, some others may allow a normal life if they are diagnosed in good time and then managed and treated correctly. Rare disorders can affect physical capabilities, mental abilities, behaviour and sensory capacities and also produce disabilities. The disabilities can be isolating, a source of discrimination and limit life opportunities, partly because there is a lack of understanding about disorders which many people do not understand and may feel fearful about.

From TV2 'Mads, Marie og Kronprinsessen' - Mads, Marie and the Crown Princess
Twelve-year-old Mads and 11-year-old Marie both suffer from a serious rare disorder as well as the pleasures and sorrows of everyday life which they experience together with their families. But they live a good life, in defiance of all the challenges their conditions give them.
In a programme to be shown on the evening of February 26th, TV2 meets Mads and Marie and Crown Prinsess Mary, and while each of them are certainly rare in their own way, it is also another kind of rarity, because there aren't many crown princesses in the world.
Mary is a patron
Crown Princess Mary is the patron for the organisation Sjældne Diagnoser [Rare Disorders], which advocates the case for patients with rare conditions. Sjældne Diagnoser is an umbrella organisation for a number of small patient organisations for more than 30,000 people with rare diseases who can be found in Denmark.
Marie and Mads in Amalienborg
Marie has had more than 200 bone breaks. She is little and very frail because her bones break very easily. She attends an ordinary school but has a helper because if she is just hit by a ball it can mean bone breaks. She can also break something if she sneezes. But neverthless, Marie is a happy girl with zest for life.
Mads has tumours affecting the nervous system and has often been close to dying. A tumour on Mads' optic nerve means that he is blind. But Mads tries to be like all other 12-year-old boys and so plays Playstation, and likes action films and bicycles.
In the February 26th programme viewers also go along when the Crown Princess meets with the children in Amalienborg, where they get to talk and the Crown Princess shows them around.
The rarest day
The date of February 29th is the calendar's rarest day which we only experience in leap years. And so the date has therefore become Rare Disorders' red letter day and will be marked with a conference day about diagnosis of rare disorders. The day is to be finished off with a rare disorders march to Copenhagen's city square, where there will be some different events and Crown Princess Mary will hand out a newly founded Rare Disorders Prize. And then, in all future leap years Rare Disorders Day will be marked as an international red letter day.

Crown Princess Mary's working visit 13 March 2007 and a brief mention here on the blog
Crown Princess Mary opens international conference at Christiansborg and here on the blog, which is when Marie met Mary for the first time
Rare Disorders Denmark
The 35 organisations which form Rare Disorders Denmark - in Danish about the coming events for the first European Rare Disorders Day on February 29
Rare Disorders Day campaign site (Danish)
Eurordis - European Organisation for Rare Diseases
Rare Disease Day "A rare day for very special people"
Eurordis: Rare Disorders Denmark including a statement from Crown Princess Mary:
People living with rare diseases face enormous challenges due to the complexity and the rarity of their diseases. The European Rare Disease Day provides an outstanding opportunity to raise awareness of rare diseases and the special needs of the patients and their families. I hope that by bringing together experience and expertise from across Europe, it will help to improve the lives of those living with rare diseases.
Her Royal Highness Crown Princess Mary
Patron of Rare Disorders Denmark

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