Our association has been founded with the purpose to boost the awarness of the XLPDR. But we also would like to help families with children sick affected by other rare diseases.  We would like to help them with daily problems, to fund research projects on XLPDR but also informative and educational projects. But we can't succeed if we're alone, that's why we're here to ask everyone's collaboration, also public bodies, companies and... YOU, even if you're not directly involved with rare diseases.

Our association, as you probably know, still doesn't get any public help. 

So far we paid every expense with our own money, directly from our pockets. And our bank account still didn't receive any donation. No one!.

We would like to help dr.Zinn. He's the only one scientist in the world doing researches on XLPDR. But each genetic test on a DNA sample costs $3000! We would like to grant dr.Zinn the possibility to continue his wonderful work on XLPDR, that's why we ask your contribution.

The best way to help him (and your children, and their children!) is to donate (click here to know how)

The annual association fee is €20. But don't even imagine we could go far with the bare annual fee. We have to make a more important effort. 

On september we will start with a bunch of found-rising initiatives. Dinner, meetings, marathons. 

If you live near us, be ready to be involved!

But if you live far away, USA, Canada, Australia, be ready to make your effort too!

You could organise your own found-rising initiatives! 

Let's talk about it, we will tell you our experiences, and I'm sure that you'll find the best way to involve your friends, your relatives, your company.

Each achievemnt will be a collective success!

We're trying to help our children, and their future children! And children don't spend so many words. They just smile.

So, let's give them a smile. Their smiles will be our reward.

Well, thank you all. I'm sure that you'll give them a smile, and Alex's one will be the first!

Below you'll find a short report on our present economical situation, with a little explaination.

Thank you again.

Patrizia Gentile

A few words about our economical situation.

We got €140 from seven annual association fees. And we're among those seven people!

We spent €1409.81, so we need €1268.81 just to reach the balance....

Our expenses are:

• association foundation
• printed matter (leaflets, business cards)
• trip to Germany (international rare disease conference)
• trip to Rome (rare disease)
• web site 

FINAL BALANCE