HSP EUROPE

Where we are

Participating Countries

* Denmark * France * Norway * Spain

* United Kingdom

Background

* The German patient organization was the initial leader for HSP'ers in this project, but, last Christmas, they decided not to continue. They

consider the way proposed as very expensive and demanding lots of money and work.

* UK, French, Danish, Norwegian and Spanish groups decided to continue to try to set up an HSP European Federation in the project Rare!

Together.

Other European countries

* Until today we have searched without success for another national organizations in Italy,

Portugal and Austria

* French ASL has contacted with a Belgian group.

* Rob and ASL contacted with a Swiss group.

* Via the National Focal Points we are triyng to find others groups in Europe.

Out of Europe countries

* In a future we can contact with USA and Australian HSP organizations.

* Spanish AEPEF is in contact with patients from Argentina, Mexico, Chili and other speaking

Spanish countries * French ASL is in contact with patients from

French Speaking countries?? * UK HSP organization ???

Problems

* Being Rare Disease organizations, we have very few people.

* So, we have a short number of persons able to work at an international and multilingual level.

* An European Federation means at least expenses for travels for the meetings, and we do

not have this money.