Last updated on September 19th, 2025 at 02:12 pm
Our genetic counsellor-led helpline covers all genetic conditions and is available free throughout the UK. It is a confidential and non-judgemental space. You can ask questions, find the information you need, and discuss your feelings, concerns and fears about a genetic condition.
Our helpline is for people with a genetic condition, their relatives, professionals and anyone who has questions or needs to know more about genetic conditions, testing and diagnosis. Whether or not a diagnosis has yet been made, no matter how rare the condition, or how long ago concerns started, we can explore what’s happened and potential next steps.
You can leave a voice message or send us an email any time. We are a small team and do all we can to respond to enquiries as quickly as possible, usually within two working days. On occasions the time we take to get back to you may be a little longer, but we will always respond as soon as we can.
Your enquiry will be treated in the strictest confidence. Please look at our Privacy Policy for more information.
How you can contact our helpline
Telephone answering service: 0800 987 8985
Email: helpline@genepeople.org.uk
Online Form: Enquiry form
When leaving us a voice message or sending an email, please ensure you include your name, telephone number, name of the genetic condition if known, and a brief outline of your main question or concern. This will enable our team to more effectively respond to your enquiry.
Our Genetic Counsellor, Emily, responds to the majority of enquiries. Drawing on her genetic expertise and over 14 years experience in the field, she provides empathic support to the many people we speak with who are facing difficult and distressing situations in relation to a genetic diagnosis affecting them, their child or another family member.
We may not always be able to answer your questions but we will do all we can to help and support you.
Please note that our helpline cannot provide diagnosis, referrals, genetic testing, result interpretation or therapeutic psychological counselling.
HOW DID WE DO?
We welcome and value your feedback so that we can continue to improve and secure ongoing funding. We have short online surveys that we send to everyone who contacts our helpline. We send the survey before you speak with our helpline team and again afterwards. Responses are anonymous and we greatly appreciate you taking the time to complete these surveys.
If you have used our Helpline, you can complete the survey here: Feedback survey
WHY DO PEOPLE CONTACT OUR HELPLINE?
There are many reasons why people contact our helpline. Some of the more common issues are listed below.
- How to access genetic testing.
- When and how to get referred to a genetic clinic.
- How to get a genetic diagnosis.
- Support with understanding genetic test results.
- Information about a specific condition.
- Understanding the chance of other family members and children inheriting the family condition.
- Options for having children and family planning when there’s a genetic condition.
- When a family member is diagnosed, understanding what it might mean for you.
- Help with identifying relevant research studies.
- Support with the challenges that life with a rare genetic condition can bring.
- How to find others affected by the same condition.
- Someone to talk to who is independent and understands.
You might find information to help with these issues on our website, but if not, or you would just like to discuss your individual situation, please get in touch.
Here is some feedback we have received from our helpline enquirers
“You’ve been fantastic. We were feeling quite lost and didn’t really know what to do next until you helped by providing all this great information and support. I couldn’t have asked for a better informed or more empathetic person to talk to. Thank you so much.”
“Most helpful conversation I’ve had all year! Very grateful that this service exists! Emily was fantastic, and took the time to make sure that I had all the information I needed in order to make a decision about my next steps. Thanks again”
“You are providing a wonderful service, delivered with softness and sensitivity.”
“I do not think I can thank you enough for your invaluable support and your non-judgemental approach.”
“Just want to say Thank you so much for your phone call helping me with dealing with my daughter’s situation. The help and advice you gave me was amazing. It really put me at ease. I had so many anxieties and your counselling help relieved them all.”
“I spoke to Emily who was so incredibly helpful. She explained things so clearly and now being more informed on the process ahead of me and the options, I feel I have more understanding and a little less anxiety. Thank you so, so much.”
“Thank you so much for our telephone conversation yesterday. Due to the information you provided I have been able to talk to my daughter in a positive and knowledgeable way which has helped with communication channels between us.”
“Good to talk through my patient’s condition with the member of staff. She looked into further support for this family. I will definitely phone again on behalf of other families.” (Health professional)
“To be able to bounce my concerns, thoughts and limited knowledge off you was amazing and I am super grateful.” (Professional from another support organisation)
“I would recommend this charity to anyone.”
You can read our Confidentiality Policy or the Compliments, Complaints and Feedback Policy by clicking the links.
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