For Families

The For Families section of the website provides information about BHD syndrome to people living with BHD.

 

What is BHD

Provides an introduction to BHD syndrome, as well as details of other hereditary kidney cancer syndromes.

 

Genetics of BHD

Explains the genetics of BHD, and describes how to go about getting a genetic test and how to find a doctor.

 

BHD skin lesions

Describes the symptoms, diagnosis and treatments of BHD skin lesions, as well as other possible causes.

 

BHD lung symptoms

Describes the symptoms, diagnosis and treatments of BHD lung symptoms, as well as other possible causes.

 

BHD kidney symptoms

Describes the symptoms, diagnosis and treatments of BHD kidney symptoms, as well as other possible causes.

 

Other symptoms

Describes the other symptoms possibly linked to BHD.

 

Practical Considerations

Offers a range of advice and information about genetic discrimination, insurance, family planning, clinical trials and telling others about BHD.

 

Science of BHD for patients

Contains a brief explanation of the biology underlying BHD.

 

Frequently asked questions

Answers the most common questions we get from patients about BHD.

 

Glossary

Explains some of the medical terms you need to know if you have BHD.

 

Information Pamphlets

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:

Forum

Where anyone can share experiences, post thoughts, ask questions and answer queries.

 

Written Interviews

A section where we feature interviews with BHD patients and researchers.

 

Personal stories

BHD patients offer a snapshot of how BHD has affected their lives and families.

 

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