Incontinenti Pigmenti, a rare desease is embedded in the ‘Orphan deseases National Plan’, itself  a part of the French government healthcare policy Law  on 9 August 2004. This plan was announced by the Secretary for Health and Human services on 20 November 2004. It will last five years  and  100 million euros will be put into it . It aims at a better training and the information of health professionals, patients and the general public.

Knowledge of the deseases will be developed especially as concerns epidemiology and medical research will be supported  especially in the field of new treatments.
103 hospital-seated reference centres had been ‘labelled’ by 2006.

Specific reference centres for IP have been labelled:

• the ‘reference centre for rare epilepsies’  (La Pitié-Salpétrière hospital in Paris)
• the two ‘reference centres for rare dermatological deseases of genetic origin’ in Paris ( Necker-sick children hospital) and in Bordeaux.
  
  

The reference centres ’ mission is to develop clinical and medical research projects, to define an appropriate clinical practise and to inform professionals and patients.