To join Unique's network of families, please complete the form below and make sure to tick/check the consent box at the bottom to allow us to contact you. One of the Unique helpline team will be in touch very soon so please watch out for our email.
Unique supports and informs families affected by rare chromosome and gene disorders and the professionals working with them. It's free to join us and become part of our supportive community, all of whom just 'get it'!
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.
Covid-19 Vaccinations (UK Only)
COVID-19 vaccination programme for eligible 12-15 year olds (UK only)
The JCVI has advised that “persons aged 12–15 years with specific underlying health conditions that put them at risk of severe COVID-19 should be offered two doses of PfizerBNT162b2 vaccine with an interval of eight weeks between doses”.
GP practices will identify those children and young people who are eligible to receive the vaccine and will ensure that this group of patients is offered the opportunity to receive their COVID-19 vaccination as soon as possible to enable vaccination before school term starts in September.
24th February 2021
All adults on the Learning Disability Register are invited for vaccination (UK only)
The Joint Committee on Vaccination and Immunisation (JCVI) has advised the government that all adults on the GP Learning Disability Register be offered the vaccine as part of priority group 6.
If you support an adult who has a learning disability, or if you have a learning disability, and want the vaccine, urgently talk to your GP to make sure you are registered with a learning disability.
The JCVI have acknowledged that not everyone will be on the learning disability register, such as those in residential and nursing care, and those who required support, for example as part of assisted living in the community, and those in shared accommodation with multiple occupancy. The JCVI will work with local authorities to ensure all adults with a learning disability could be offered vaccination.
Unpaid carers are now on the vaccination list (Group 6). It is advised that every parent carer should get in touch with their GP to ensure they are registered as their childs official carer. This will ensure you are included in the government’s priority group 6 (unpaid carers) and are offered the vaccine once it becomes available for that priority group.
Government guidance recommends that unpaid carers who get Carer’s Allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should be prioritised alongside people with underlying health conditions. See page 10 of the green book: bit.ly/3iGOgk9 and feel free to forward this on to your GP if they’re not aware of this guidance.
Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19
04th November, 2020
New guidance is available for people living in England who were previously advised to shield.
Children who are clinically extremely vulnerable are advised not to attend school. Appropriate arrangements should be made for education to continue at home. Please click this link below to view the latest guidelines:
If you are unsure if your child is clinically extremely vulnerable, please discuss this with your GP or health professional.
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:
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.