help@rarechromo.org
Understanding Rare Chromosome and Gene Disorders

A new chapter for our little red book, written by you

Forty years ago, Unique existed as a little red book that was shared between families for them to write down their experiences of life with a rare chromosome or gene disorder.

Today, Unique has grown to a network of thousands of people, and we are excited to invite you to write in our brand-new digital little red book. Whether you choose to share your own unique joys or challenges, an experience or an emotion… your story matters.

We are Unique… and so are you. This is a journey we can make together.

To share your story, please complete the form below. Don’t forget to tick the consent box at the bottom to allow us to share your story and photo.


    Please choose one of the questions below and tell your story in no more than 300 words. We’d love to hear from everyone from all over the world, so please feel free to leave your story in any language you prefer! If you are a parent/carer or someone who has a rare chromosome or gene disorder, please:

    Please upload a photo of yourself/your child to support your entry

    I agree to Unique using on social media, in print and digital versions the story and image(s) supplied. I understand the story and image(s) will be accessible to the public from Unique’s social channels and website. Unique will retain copyright of the image(s) as part of the campaign. I understand this will be freely, publicly available for download from Unique’s social media or website and may be disseminated via other channels (e.g. Unique’s social media) and potentially also shared by third parties. The child’s name will not be published if the anonymous tick box has been selected.

    If you or your child wish to have an image(s) removed from the campaign at any time, please contact Unique by email at

    info@rarechromo.org or telephone at +44 (0) 1883 723356.

    For more information, please visit our

    data protection, privacy policy and the terms and conditions.

    This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.

    Alternatively you can send us your details, with your consent for us to register you as a member and contact you in the future, via email, post or phone:

    Tel: +44 (0) 1883 723356

    Post: Sarah Wynn PhD, Unique Chief Executive Officer, The Stables, Station Road West, Oxted, Surrey, RH8 9EE, UK