The diagnosis of a genetic disease such as Birt-Hogg-Dubé Syndrome can be a difficult time. From the initial doctors visit, to confirmed diagnosis and beyond. Depending on where you live the level of health care from various members of the medical community may differ considerably.

The ‘Families’ section of this website contains helpful information on diagnosis and treatment, the gene test and genetic counselling. However, because of the differences in healthcare it might be useful to post your experiences of this time. Others may be able to offer you advice, or your story may prove useful for the newly diagnosed individuals.