Additional Resources

Dealing with a genetic disease can often be very challenging. To make the best choices, it is best to be well-informed, whether explaining your diagnosis to a friend or knowing if it is safe to go on a long aeroplane flight.

The following pages give a guide to the day-to-day concerns of living with a BHD diagnosis:


Genetic Counselling

Discusses why genetic counselling might be a useful option, provides resources for finding a local genetic counsellor, and offers practical information.


Genetic Discrimination

Provides guidelines for recognising and confronting genetic discrimination, and resources for learning more about relevant legislation.



Includes practical information and resources for finding the best insurance plan.


Telling Others about BHD

Offers suggestions and resources for informing others about your condition, including pamphlets to share with your doctor.