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"Orphan Europe Recordati Group" feiert den Tag der Seltenen Krankheiten 2011 - "Rare But Equal"


News provided by

Orphan Europe, Recordati Group

24 Feb, 2011, 08:00 GMT

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PARIS, February 24, 2011 /PRNewswire/ -- Orphan Europe, Recordati Group gab heute die Teilnahme am "Tag der Seltenen Krankheiten 2011" bekannt. Durch den jedes Jahr am letzten Tag im Februar begangenen Tag der Seltenen Krankheiten soll die Aufmerksamkeit auf seltene Krankheiten als öffentliches Gesundheitsthema gelenkt und der erhöhte Bedarf an Zugang zu Informationen, Forschung und Behandlung untermauert werden. Die Koordination erfolgt auf internationaler Ebene seitens der Europäischen Organisation "European Organisation of Rare Disorders" (EURORDIS) und der "National Organization of Rare Disorders" (NORD) in den USA.

Seltene Krankheiten sind lebensbedrohliche oder chronisch schwächende Zustände, die weniger als 5 von 10.000 Menschen in der Europäischen Union betreffen. Es wird davon ausgegangen, dass es heute zwischen 5.000 und 7.000 verschiedene seltene Krankheiten gibt.

"Orphan Europe" widmet sich der Arbeit mit den folgenden Krankheiten: akute Porphyrie, kongenitaler Sucrase-Isomaltase-Mangel (Saccharoseintoleranz ), Homocystinurie, Hyperammonämie durch NAGS-Mangel, nephropathische Cystinose, Patent Ductus Arteriosus, schwere kombinierte Immunschwäche - Adenosin-Desaminase-Mangel, Vitamin E-Mangel bei chronischer Cholestase und Morbus Wilson.

In diesem Jahr lautet das Thema "Rare But Equal" (Selten, aber gleichwertig) - und spricht Ungleichheiten im Gesundheitsbereich an. Orphan Europe hat Variationen bei der Diagnose und Behandlung zwischen Ländern und sogar Regionen erkannt. Als Reaktion hierauf haben wir uns aktiv mit mehreren europäischen und internationalen Netzwerken für seltene Krankheiten zusammengeschlossen EuroWilson, EPNET, E-IMD und Eunefron). Ziel ist es, Versorgungsgleichheit zu bieten.

Für den bevorstehenden Tag der Seltenen Krankheit arbeiten wir mit EURORDIS zusammen, um die Mitarbeiter von Orphan Europe darin zu bestärken, sich für freiwillige Tätigkeiten im Rahmen der "Therapeutic Recreation Programmes" (TRPs) von EURORDIS für Patienten mit seltenen Krankheiten zu engagieren. TRPs für Patienten mit seltenen Krankheiten sind eine organisierte Erholungsaktivität (Sommercamp, Spontanreise), die Kindern die Möglichkeit bietet, von der Beschäftigung mit der Krankheit und Behandlung einmal abzuschalten und sich auf Spass und Freizeit zu konzentrieren.

Freiwillige Mitarbeiter von Orphan Europe erhalten bezahlten Sonderurlaub (bis zu einer Woche), um als unbezahlte Helfer im Rahmen eines TRPs zu arbeiten.

Weitere Initiativen zu seltenen Krankheiten von "Orphan Europe":

- Mitarbeiter werden gebeten, ein << Rare Disease Day Awareness >> -Armband zu tragen, das von der NORD ausgeteilt wird

- Orphan Europe hat sich dem "Joined Friends of Rare Disease Day" angeschlossen

Für weitere Informationen wenden Sie sich bitte an:

Samantha Parker sparker@orphan-europe.com

http://www.orphan-europe.com

http://www.eurordis.org/content/therapeutic-recreation-programmes

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