"When sun hurts!"
At first there was a list of 10 EPP patients. This list had been sent around by our dear Anne on 4th July 2004. This was the beginning of our self-help group.
Already in November we met each other for the first time:
First meeting of the EPP afflicted persons from Luxemburg and Germany
Friedberg, 6th November 2004, EPP-afflicted persons met for the first time, persons who are hurting by less sun exposition. For each patient this genetic disorder means a major social disadvantage.The possibility to get this disease is about 1:1000000. This is the reason why most of the doctors don’t recognize EPP and think it is a sun allergy.
One year later in November 2005 we already counted 30 EPPers. This motivated us to found a real association to get a good structure for our group. Since then we have been called "Selbsthilfe EPP e.V."
Only 2 years later, in November 2006, we are proud to be a group of 60 registered EPPers . We built workgroups and we recruited volunteers as representatives for the different parts of Germany.
In 2007 our "family" will grow further, we hope so. And we are looking forward to our next "EPP family reunion" with many new faces.