X-linked reticulate pigmentary disorder

with systemic manifestations
work with us
Administrator 17 January 2011 PDF Print E-mail

Our website doesn't ask for money contribution.

We don't have a structure to pay, we don't need money.

We need information, stories, we need your help.

We need you to help us to contact other people that are dealing with XLPDR

We need you to tell us your story, that will help other people as a compass in the fog. 

Parents that just discovered their son is sick with XLPDR, they're scared and have no information. They need to KNOW.

 

Yes, but.... HOW TO HELP?

 

So, you can help in so many ways:

- use our email This e-mail address is being protected from spambots. You need JavaScript enabled to view it to send us your stories or technical contribution.

- connect to our website to revise our articles. Most of us are italian and our english is still so poor. Help us to correct our mistakes.

The first step is to register to our website. With your ID and password you'll be able to read reserved documents and to write new articles or correct old ones.