FACS Syndrome has always been considered as a rare disorder, however with an estimated 20,000 children affected upto now and 500 babies born per year to this, I wouldnt consider it a rare disorder. Janet and I are always looking at ways of spreading awareness, so we were thrilled when our membership for INFACT was accepted by Eurordis.
The European Organisation for Rare Diseases (EURORDIS) is the voice of 30 million people affected by rare diseases throughout Europe. It is a non-governmental patient driven alliance of organisations and persons active in the field of rare diseases. They cover 4000 rare diseases in more than 50 countries and 600 patient organsisations.
FACS Syndrome is a global condition. Sodium Valproate is sold all over the world but under different names ie Epilim here in Britain, so to be accepted into Eurordis is fab news for us. Just in time for the European review into Epilim which we initiated with MHRA last year. Heres to more awareness ::))