Genetic counselling provides information to patients and their families with a genetic disease such as BHD. Genetic counsellors have specialist training in genetics and can help families get a diagnosis, find out who else in the family has the disease, find information about the disease, and give advice about family planning, genetic discrimination and health insurance.
If you would like more information, Macmillan Cancer Support has some excellent advice about how to prepare for a genetic counselling consultation and what questions to ask here.
Telephone or email consultations
Most genetic counselling appointments will be face to face at a hospital or clinic. However, if this is not possible for you, it may be possible to talk to a genetic counsellor via telephone, email or online video-conferencing.
Paying for a Genetic Counsellor
Genetic counselling may be covered by your private healthcare plan, or your public health service: you will be able to check with your doctor, hospital or insurer. For private counselling, fees vary.
Finding a Genetic Counsellor
Links for finding a local genetic counsellor are provided below. Depending on your healthcare system, it may be easier to get an appointment if your family doctor refers you to a genetic counsellor.
- Orphanet Directory (covers European countries and some other countries, including Canada and Japan)
- Genetic Counselling Services page by the World Health Organization (WHO)
- Orphanet Directory (covers European countries and some neighbouring countries)
- UK: NHS guide to genetic counselling, Genetic Alliance, UK Genetics Centres
- UK: NHS England Genomics Unit
- UK patients only: Gene People provides expert information and support for people affected by a genetic condition, their families, carers, healthcare professionals, genetic condition specific support groups and the public. Their services include a free, genetic counsellor led helpline for all genetic conditions: 0800 9878985 or email: firstname.lastname@example.org
- Genetic Counselling Services
- Australian Clinical Genetics Services
- Genetics Services of Western Australia
First ask your usual doctor if he or she can find a local genetic counsellor for you. You will need a referral from your primary care physician to get insurance coverage for genetic counselling.
- National Society of Genetic Counsellors
- National Cancer Institute, Directory of Genetic Service Professionals
Have any outstanding questions you’d like to ask or any advice for anyone new to these issues? Why not post your advice or questions on the BHD Syndrome Facebook Group?
Last Updated: May 2021
Review date: May 2024