Glad to come across this community

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Offline jotembe

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  • Hello everyone..
    • Thalassämiehilfe ohne Grenzen e. V.
Glad to come across this community
« on: February 24, 2012, 01:33:40 PM »
Hello everyone,

I am Juergen from Southern Germany. I am not a thal patient but my own inheridited disease helps me to understand, how it is to live with a deficiency.
1976 an urgent call for blood from Cagliary/Italy brought Thalassemia and me together. 1995 ten volunteers started the first German charity  thal relief association. I was elected as the chairman of this but2000  had to quit, because of suffering very hard from my own disease.
Becoming more and moreaware of the fact that there is too little knowledge with so many physicians in 2007 we started a new charity association, the "Thalassämiehilfe ohne Grenzen e. V." (i.e. Thalassaemia Relief without Frontiers). With this we aime at the upbuildung of public awareness of thalassemia, providing information and advice to patients and their families, wherever they might live on our planet and sharing new experiences and results of scientific studies about thalassaemia.
Main question in German requests is: "How to manage pregnancy if being affacted by thalassaemia?"

Thank you for reading

Juergen

You will encounter more information (German language) at  www.thogde.org (English version allready is in preparation).

 

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