Thursday 18 October 2007

Mary @ Rare Diagnosis Conference

Today Crown Princess Mary has attended a conference focused on rare diagnosis as its patron at Christiansborg Palace. The convenor is Rare Disorders Denmark, an alliance representing more than 30 national rare disease organisations. In Denmark 20-30,000 people suffer a serious rare disease which can be life threatening and untreatable. The Rare Disorders alliance works to improve conditions of life for sufferers and support networks to help overcome the isolation of patients and their families. Rare conditions can produce a lot of suffering without correct diagnosis and quality health care and some patients suffer because of delays in diagnosis. The alliance members and Rare Disorders Denmark, and similar organistions forming throughout Europe, hope to increase awareness, improve diagnosis, treatments and quality of life for sufferers and their families. Most rare disorders affect children and are genetic.

Rare Disorders Denmark
Member organisations
Rare Disorders Denmark is a member of the European Organisation for Rare Disorders

Added: See Søren Steffen's gallery

and Madeleine Glindorf's gallery (MG direct)

Added: From Medical News Today 'Medicines For The Few - How Can Society Better Understand The Reality Of Medicines For Rare Diseases?' One in 33 babies is born with a rare and serious genetic disease - most of which have no treatment(1). Yet the burden of rare diseases is immense and affects millions of individuals across Europe(2). This week more than 120 stakeholders from patients' organisations, academia and the biotechnology and pharmaceutical industries came together for the 8th EPPOSI Workshop on Partnering for Rare Disease Therapy & Development in the Danish Parliament, in the presence of HRH Crown Princess Mary of Denmark, to assess how European society can better understand the reality of rare diseases in Europe.

During the workshop, participants identified the following key areas that need to be addressed to tackle the continuing issue of rare disease treatments and their availability to patients.... (thanks m!)

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