This is for you, that are reading my words....

This association was born to become OUR association. We have many targets, good will, and we want to be a base for people that have problems with a rare disease.

We would like to me something more, we would like to be a place where a scared parent could feel accepted, cuddled, protected. 

But my personal dream is to sponsor a private research for my son Alex and for all those people that are and will be in his same condition.

My dream is to find a doctor, a scientist ready to invest himself in this battle, only for 9 (NINE!) people in the world. 

I know it's a crazy idea, a mission impossibile. But I think that everyone deserves a possibility, and I want to try it!

If you read my words and think you could help me in this battle, if you think to become a drop, to make the sea.... THANK YOU!

You can send your donation via a bank money transfer.  

bank name Banca Prossima
agency Filiale 5000
address Via Rubini 6 - 22100 Como (CO) - Italy 
bank account code IT41P0335901600100000066953
swift BIC code     BCITITMX
recipient XLPDR International Association

 Or using your credit card, debit card, prepayed card or PayPal account, by clicking on the "donate" button below:



Thank you!

Patrizia Gentile

President of the XLPDR Association

Dona il 5 X 1000
Sunday, 21 October 2012 14:56

Come fare?


1.Compilare la scheda sul modello 730 o Unico;

2.firmare nel riquadro indicato come "Sostegno del volontariato...";

3.indicare nel riquadro il codice fiscale di XLPDR INTERNATIONAL ASSOCIAION ONLUS





Anche in questo caso, e’ possibile devolvere ad  XLPDR INTERNATIONAL ASSOCIATION ONLUS  il proprio 5 X mille:

1.Compilare la scheda fornita insieme al CUD dal proprio datore di lavoro o dall'ente erogatore della pensione, firmando nel riquadro indicato come "Sostegno del volontariato..." e indicando il codice fiscale di  XLPDR INTERNATIONAL ASSOCIATION ONLUS

2.inserire la scheda in una busta chiusa

3.scrivere sulla busta "DESTINAZIONE CINQUE PER MILLE IRPEF" e indica il proprio cognome, nome e codice fiscale;

4.consegnarlo ad un ufficio postale (che la riceverà gratuitamente) o ad un intermediario abilitato alla trasmissione telematica (CAF o commercialista).



How to give a smile
Saturday, 04 August 2012 15:44

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 



Income €140
Expenses -€ 1.409,81
Balance -€ 1.268,81
date amount explaination
10/03/2012 € 20,00 Quota associativa Granini Enea
10/03/2012 € 20,00 Quota associativa De Marco Rosella
10/03/2012 € 20,00 Quota associativa Gentile Patrizia
10/03/2012 € 20,00 Quota associativa Randazzo Salvatore
 10/05/2012  € 20,00 Quota associativa Katia Marra
 22/05/2012 € 20,00 Quota associativa Isabella Romano
 19/06/2012 € 20,00 Quota associativa Rossana Amabile Burbi
totale entrate € 140,00


 date  amount  expense description
08/03/2012 € 174,35 spese registrazione statuto notaio
19/04/2012 € 100,00 biglietti 5xMille-tipografo
25/05/2012 € 60,00 stampa volantini.poster -Alex
01/06/2012 € 48,20 Restaurant ORPHEUS Erlangen
01/06/2012 € 40,00 benzina ESSO ERLANGEN
01/06/2012 € 165,00 iscrizione convegno Erlangen GEntile Patrizia
01/06/2012 € 142,00 camera albergo Erlangen-Novotel Gentile Patrizia notti 1/6 e 2/6/2012
01/06/2012 € 8,00 vignetta autostrada Austria
01/06/2012 € 50,00 volantini poster Erlangen
02/06/2012 € 13,85 benzina ESSO ERLANGEN
03/06/2012 € 10,36 ERDGAS Munchen Freiham
03/06/2012 € 90,00 extra albergo Novotel Erlangen
01/06/2012 € 165,00 iscrizione convegno Erlangen Randazzo Salvatore
01/06/2012 € 142,00 camera albergo Erlangen-Novotel Randazzo Salvatore notti 1/6 e 2/6/2012
13/06/2012 € 138,00 biglietti aereo Roma-congresso Sanit Patrizia Gentile e Rosella De Marco
13/06/2012 € 56,00 biglietti treno Roma - Fiumicino Patrizia Gentile e Rosella De Marco
04/08/2012 € 6,05 attivazione posta certificata c/o ARUBA
totale spese  €1409,81





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