If you would like to register on our confidential database for a Unique Family Membership or for a Professional Membership please complete the application form below and make sure to tick/check the consent box or we'll not be able to contact you. One of the Unique helpline team (Beverly, Arti, Sarah or Francesca) will respond within 7 days with your membership number, so please watch out for our reply email (including your spam folder!). Family Membership is open to those affected by a Rare Chromosome Disorder or certain Autosomal Dominant Single Gene Disorders causing as a minimum learning disability/developmental delay, among other symptoms. Unique does not cover Autosomal Recessive Single Gene Disorders, Metabolic Disorders or Mitochondrial Disorders.
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:
Check out Unique’s guide for families, containing lots of Covid-19 related information, guidance, ideas, resources and sources of help. Includes education, health, therapies, activities and much more. Click Here to read and download it (free of charge), then click Practical Guides for Families and scroll to Self-isolation guide to helpful resources.
NEW interactive online patient tool for people with rare diseases to better understand their risk of Covid-19
26th May 2020
A new patient interactive tool that allows people with rare diseases to better understand their risk of Covid19 has now been released.
It is the result of a collaboration between the British Society for Genetic Medicine, the Clinical Genetics Society and Aimes (a healthcare IT company). The tool is based on advice from major specialist colleges in the UK and can be accessed here or you can copy and paste the link below:
The purpose of the tool is to open a conversation with the patient’s primary physician –it does not replace individualised advice.
Video versions of Covid-19 Information for People with Rare Genetic Disorders
6th May 2020
Information regarding COVID-19 for people with rare genetic/genomic disorders, including rare chromosome and gene disorders are now available in video versions for people with visual impairment and people who prefer audio/visual information rather than text.
With thanks to the British Society of Genetic Medicine, the Clinical Genetics Society and the Association of Genetic Nurses and Counsellors for producing these videos.
BSL Translations of Covid-19 Information Sheets for People with Rare Genetic Disorders
6th May 2020
The information sheets regarding COVID-19 for people with rare genetic/genomic disorders, including rare chromosome and gene disorders are now available in BSL (British Sign Language). With thanks to the British Society of Genetic Medicine. the Clinical Genetics Society and the Association of Genetic Nurses and Counsellors for producing these videos.
New general advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders
14th April 2020
Below you will find some new information sheets regarding COVID-19 for people with rare genetic/genomic disorders, including rare chromosome and gene disorders.
These information sheets were kindly written and produced by Dr Elizabeth Forsythe, Dr Lara Menzies, Kelly Kohut, Dr Nicki Taverner, Professor Eamonn Sheridan and Dr Frances Elmslie, on behalf of the British Society for Genetic Medicine, the Clinical Genetics Society and the Association for Genetic Nurses and Counsellors.
Now, read on for some general advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders:
Includes patients with developmental disorders and undiagnosed developmental delay, rare single-gene disorders and chromosomal disorders.
Excludes patients with severe congenital heart disease, immunodeficiency
disorders or lung disease e.g. cystic fibrosis, who should follow the advice of
their existing specialist advisors e.g. cardiologist, immunologist or
respiratory paediatrician. If your child
has a pre-existing lung or breathing problem,
please seek the advice of their
We understand the Coronavirus (COVID-19) pandemic is very concerning for everyone but this may be especially so for families caring for
individuals with developmental disorders, undiagnosed developmental delay, rare
single-gene disorders and chromosomal disorders. Coronavirus can cause severe lower respiratory tract infection
in some individuals especially the elderly and those with pre-existing
disorders. In general, children appear to be
more mildly affected than adults but anyone with a genetic disorder that
compromises their swallowing or breathing or who suffers from frequent respiratory
infections or has previously been hospitalised for respiratory problems may be at higher risk.
There are as yet very few data about infection
rate in children. Overall the death
rate is much lower than in older people.
see the WellChild website for a clear 10 point plan and information
specifically for parents and carers of medically complex children: https://www.wellchild.org.uk/2020/03/18/ten-ways-to-keep-my-child-with- complex-health-needs-safe/. This includes
a helpful link to a poster to put on your front door to advise
visitors to your home of the precautions they need to take.
If, at any point, you think you or your child has
developed symptoms of coronavirus, such as a new, continuous cough and/or high
temperature (above 37.8 °C), seek clinical advice using the NHS 111 online
coronavirus service (https://111.nhs.uk/covid-19/). If you do not have access to
the internet, call NHS 111. Do this as soon as you get symptoms.