The For Families section of the website provides information about BHD syndrome to people living with BHD.
Provides an introduction to BHD syndrome, as well as details of other hereditary kidney cancer syndromes.
Information on BHD specialists and specialised care centres.
Explains the genetics of BHD, and describes how to go about getting a genetic test and how to find a doctor.
Describes the symptoms, diagnosis and treatments of BHD skin lesions, as well as other possible causes.
Describes the symptoms, diagnosis and treatments of BHD lung symptoms, as well as other possible causes.
Describes the symptoms, diagnosis and treatments of BHD kidney symptoms, as well as other possible causes.
Describes the other symptoms possibly linked to BHD.
A patient registry gathering information on FLCN mutations and symptoms in BHD patients.
Offers a range of advice and information about genetic discrimination, insurance, family planning, clinical trials and telling others about BHD.
Contains a brief explanation of the biology underlying BHD.
Answers the most common questions we get from patients about BHD.
Explains some of the medical terms you need to know if you have BHD.
Pamphlets offering brief overviews of the diagnosis, symptoms and treatment options for BHD. These can be printed and shared with your family, friends and doctor.
Also of interest:
Where anyone can share experiences, post thoughts, ask questions and answer queries.
A section where we feature interviews with BHD patients and researchers.
BHD patients offer a snapshot of how BHD has affected their lives and families.
Please help us make BHDSyndrome.org as useful for you as possible by sharing your thoughts and suggestions.