Dr. Rosemarie Watson:

We have submitted the care pathway to the National Rare Diseases Office. That is with the office and it has been published and the hope is that the HSE will back all of the services that are required. Debra International has internationally-agreed guidelines for care in several areas. There must be ten or more sets of guidelines now including psychosocial management, emergency management, operating room management and dental management among others. Those guidelines are available at the click of a button now. Anyone can get those which is a huge improvement over my time.