Help & Advice
Our Help and Advice page has answers to common queries about living with BHD. This includes information on insurance, talking with family members, understanding your genetic mutation and more.
If you can’t find the answer to a question on our website we are always here to help. Please contact us.
There is also a BHD patient-led Facebook group where you can learn from others' experiences and share your own stories.
Explaining the Different Types of Healthcare Professionals
In this article, we break down the different types of healthcare professionals you may come across and when you would see them during your BHD journey.
Explaining the Different Types of Kidney Cancer
Kidney cancer is the most serious complication of Birt-Hogg-Dubé syndrome (BHD). There are many different types of kidney cancer. In this toolkit, we explain the different types of kidney cancer and find out if they’ve been reported in BHD.
Explaining the Different Types of Scans
There is no cure for BHD. Therefore, management of your symptoms through regular scans is important to minimise the risk of kidney cancer. In this article, we will explain the different types of scans you may have and when and why you would have them.
Getting Your BHD Diagnosis.
Find out what happens at an appointment with a clinical geneticist.
Telling Others About BHD
Once you have been diagnosed with BHD, you may have concerns about explaining your diagnosis to others. We have developed some resources to help you educate your family and doctors.
Understanding your BHD Test Results
This guide will help you understand your genetic test result and how to interpret the “code” you are given when you get your DNA sequencing results back.
Understanding your Genetic Test Result – Amino Acid Mutations
DNA is a unique code that contains all the instructions required for making the proteins needed for the development, growth and function of our bodies. Learn how your FLCN mutation changes this code.