“ Just like any life story our association has its own … So then, once upon a time…

Everything started in June 2000 as I was trying to find a specialised institution for my eighteen-year-old daughter Lisa.

I was inquiring in different places all the time thinking ‘there must be an Incontinentia Pigmenti association to get some help from. It can’t be otherwise!’ Well, yes, it could be. There was no such association!

I didn’t hesitate a second. The internet: there was nothing else for it. That year I spent the whole summer trying to get in touch with people knowing this rare genetic disease. After spending night after night before the screen, I did make some contacts and ‘the House for Orphan Diseases’ in Paris gave me the names and addresses of two mothers who had children with IP. We were a party of three families.
On October 6th 2000, a ten minutes TV report about incontinentia Pigmenti was shown on Channel 5 during a programme called “ The Health Journal”. The journalist gave out my e-mail address, my phone number and post address. And suddenly we were a party of five.
A few days later, other people contacted me par post and on the web. We were a party of fourteen families.

By the end of 2000, two other families joined us: some friend of one of the families and someone living in Belgium!!!

We were a party of twenty families and we then decided to unite within an association that was established on October 30th 2001, in Paris and more precisely at Necker Hospital.
The association has greatly developed since then and we can now put up much more  money for both research and help to the patients and/ or their families.
‘Never again’ was our  motto from the start and I find it fits the situation better than ever.
 

Pascal Garcia, founder of the Incontinentia Pigmenti France association.