Newly Diagnosed Information

Newly diagnosed patients and their families often come across Doctors who have limited knowledge of the disease, and don't know which way to turn. We would like every new patient to get the support they need.

We understand the difficulties and concerns that newly diagnosed Fibrous Dysplasia/McCune-Albright Syndrome sufferers may have when first informed that they have these diseases. It can be a very difficult and confusing time. We took our members feedback and comments along with inputs from specialist Doctors and Consultants who support our charity and have attempted to provide a number of information resources to advise such patients. It hopefully will help them to understand what the impact of the diseases many have on them and most importantly provide a link to how best to approach their own specialists for guidance.

The information provided here will grow, however we would recommend that the areas of most interest will currently be the following links :-