I did hesitate a long time before writing this post, even some more time before posting this, but if that can help just a person...

Rare Diseases is my centre of interest since one year.

Getting better after a social phobia and starting to prepare my new formation (as an assistant in the information field-not sure of the translation but that like an assistant librarian) with the help of an association, I met there a person having a rare disease and that person was so disoriented by what she was living, by the uncompetent doctors, by the reaction of people around, that I just decided to help and it was a real release.

We found information she didn't know about it, we found other people, in Romandie and in France who are dealing with the same thing. And people in the anglosaxon countries who were having the same reaction from people and doctors around them....

So sad.

This is how I started my project of support group and even if I don't  know how I will do it, I just do it.

I know my help is very limited. I don't have medical background, my knowlege is just from reading reports, medical websites and the experience from the patients in other countries, who are the specialists of their illnesses.....

But the fact that somebody is interested to help, ready to listen to them is something great.

Since that time, I've got to know some more patients and three more illnesses and I was even contacted by a new expatriate family arriving in Switzerland.

Compared to some other countries (like France, UK or the USA), almost everything is to do in Switzerland about Rare Diseases. Hopefully, political changes are on their ways.

Well. I'm not sure why I wrote this, even if it makes sense....

But in case you know somebody with a rare disease, have a thought about what you could do to support that person.

thank you for your time.

Bertrand_Geneva

(hope my english is not too bad)