PARIS, February 24, 2011 /PRNewswire/ -- Orphan Europe, Recordati Group, announced it will celebrate Rare Disease Day 2011. Observed annually on the last day of February, Rare Disease Day seeks to call attention to rare diseases as a public health issue, and to reinforce the increased need for access to information, research and treatment. It is coordinated at the international level by the European Organisation of Rare Disorders (EURORDIS) and by the National Organization of Rare Disorders (NORD) in the US.
Rare diseases are life-threatening or chronically debilitating conditions affecting no more than 5 in 10000 people in the European Union. It is estimated that between 5,000 and 7,000 distinct rare diseases exist today. Orphan Europe works with the following diseases: acute porphyria, congenital sucrase-isomaltase deficiency, homocystinuria, hyperammonaemia due to NAGS deficiency, nephropathic cystinosis, patent ductus arteriosus, severe combined immunodeficiency - adenosine deaminase deficiency, vitamin E deficiency in chronic cholestasis and Wilson's disease.
This year's theme is "Rare but Equal" - addressing health inequalities. Orphan Europe has recognised variability in the diagnosis and management of rare diseases between countries and even regions. In response to this we have actively partnered with several European and international rare disease networks with the mission to provide equal care (EuroWilson, EPNET, E-IMD and Eunefron).
For the upcoming Rare Disease Day we are collaborating with EURORDIS to encourage Orphan Europe staff to engage in voluntary work for the EURORDIS therapeutic recreation programmes (TRP's) for rare disease patients. TRP's for rare disease patients are any organised recreation activity (summer camp, ad hoc trip) which gives children the possibility to take a break from thinking about disease and treatment and focus on fun and leisure.
Orphan Europe volunteering staff will be given exceptional paid leave (up to one week) to work as an unpaid helper on a TRP.
Other Orphan Europe Rare Disease Initiatives:
- Employees are encouraged to wear a << Rare Disease Day Awareness Bracelet >> distributed by NORD - Orphan Europe has joined friends of rare disease day
For further information please contact: Samantha Parker sparker@orphan-europe.com
http://www.eurordis.org/content/therapeutic-recreation-programmes
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