BHD disease info & support

BHD (Birt-Hogg-Dubé Syndrome)

BHD Birt-Hogg-Dubé Syndrome

 

 

Birt-Hogg-Dubé (BHD) patients often have benign skin lumps (fibrofolliculomas), lung cysts and collapsed lung (spontaneous pneumothorax). Also there is a higher risk of developing kidney cysts and kidney cancer.

BHD Foundation – Information for BHD patients can be found on this website.

VHL UK/Ireland Facebook Group – A private Facebook group to discuss, find out information and meet others affected in your area.

INSPIRE ForumThe VHL Family Alliance Group in INSPIRE supports BHD as discussion topics within the VHL Community. It provides private patient to patient message board support. It allows patients to talk with each other about their questions and concerns, while providing emotional support to one another. You can also write your own journal entries or start or add to discussion threads. There is privacy control. We strongly advise you to join and make friends.

Rare ConnectRareConnect is an alternative to INSPIRE, but has the advantage of providing language translation facilities. You can look in on RareConnect and then decide if you would like to join by creating your own user name and password

Other useful information

Healthy living – the importance of diet and lifestyle to VHL and similar genetic conditions

Cancer in Our Genes International Patient Databank – take part in the VHL Alliance’s clinical research study

VHL Alliance Research – the latest VHL Alliance research

Please note that all the above links are provided for information only and should not be taken nor relied upon as medical advice on how to treat your specific manifestation of these conditions. Rather, by providing context and understanding, we hope that the information provided will empower the patient to be a better partner in his or her own care and will facilitate constructive conversations between patient and physician. The information provided is intended to add to, not replace, conversations between a patient and a physician, as the specific details and the patient’s total health situation need to be considered in making the final decisions about treatment.

BHD fact sheet

VHL UK/Ireland aims to raise funds via fundraising and donations for research, provide information and support for those affected and raise awareness.

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