help@rarechromo.org
Understanding Rare Chromosome and Gene Disorders

Helpline

Here at Unique, we understand that living with or caring for someone with a rare chromosome or gene disorder can sometimes feel overwhelming or confusing. Or sometimes you just have questions and don’t know where to go for the answers. That’s why we have a dedicated, friendly helpline team here to unpick complicated diagnoses, provide accurate information, practical guidance and compassionate support.

Our experienced team, made up of Anita, Emily, Francesca, Niamh and Sarah have extensive knowledge of genetics, genetic testing and how rare chromosome and gene disorders can affect everyday life. Whether you or your child has recently received a diagnosis, you have specific questions about genetics, or you simply need someone who will listen and understand, we are here for you.

You are not alone.

How we can help

We offer:

  • Support following a new diagnosis
  • Clear, reliable information about rare chromosome and gene disorders
  • Help understanding genetic reports and terminology
  • A listening ear when things feel difficult
  • Signposting to relevant services and resources

Information and Support for Professionals

We work closely with health and social care professionals, as well as teachers and educators. We welcome enquiries from professionals and can provide tailored information, guidance or training to support you, your team and the families you work with.

Contact us

You can get in touch with Unique’s helpline team by:

  • Telephone: +44 (0)1883 723356
  • Email: help@rarechromo.org

Our telephone line operates during UK office hours (9:00 – 17:00). If we are unable to answer your call, please leave a voicemail or send us an email and we will respond as soon as possible.

Book an appointment

In addition to our telephone helpline, we will now offer pre-booked appointments for you to talk to a member of our team. These appointments provide dedicated time to talk through your questions or concerns in more depth and are available to anyone who needs them, whether you’re a Unique member or not and can be made internationally.

It is important to note that, while we are highly knowledgeable and experienced in rare chromosome and gene disorders, we are not medically trained and cannot provide medical advice, diagnosis or treatment. Any information we provide is not intended to replace the advice of your doctor or other qualified healthcare professional.

You can book a 30 minute appointment using the form below, or by clicking here. So that we can make sure you get the best out of your appointment time and speak to the most suitable member of our team, we will ask you to complete a short form to tell us a little more about what you would like to discuss and you will get the opportunity to select whether you would prefer a phone call or a online call via Microsoft Teams. All information you provide will be kept confidential.

Please note, our pre-booked appointments are being trialled with a one day trial on Monday 12th October 2026, therefore you will need to navigate to this date to find the times still available.


Urgent support

Please note, Unique’s service is not a crisis helpline. For urgent and immediate support in the UK, please contact the following organisations

UK

Outside the UK

  • If you live outside of the UK please contact your local mental health service, charity or emergency service responder.

You may also find it helpful to review our guide ‘Mental Health and Wellbeing’