Annual Reports

...Please use the link above to view our online accounts for the financial year ending 31 March 2023. The report contains details on how Unique is run and how and...

Donate

Data Protection & Privacy Policy

...our chosen online fundraising partners such as Virgin Money Giving and Justgiving, who will collect your personal information when you set up an online fundraising page to collect sponsorship. We...

Terms & Conditions

...area linked to Unique, you agree that you will not upload, post, or otherwise transmit any content — including text, communications, software, images, sounds, data, or other information (“Content”) —...

Awareness Day 2023

...now and in the lead up to June 22nd (and beyond!) …..and this one has been designed for use on Instagram or Twitter (from a PC, just right click to...

COVID-19 General Advice

...door/Unique Shielding Poster- French TranslationDownload Downloadable warning poster for your front door/Unique Shielding Poster- Spanish TranslationDownload New general advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders 14th April...

Unique's Funday Friday | 19th June 2020

...few. We have seen professionals offering telehealth appointments via phone calls and/or video chats and schools offering online tutorials. A lot of these adaptations were not provided to us prior...

Families

Unique Family Members' Area Registration

...omit any zeroes (0) at the start of the number. Choose your own online name and password. Not yet a registered Unique family member? Just go to the Become A...

Professionals

Gift ideas and useful websites

...the USA. https://justlikeyoudolls.com/dolls with cochlear implants, etc US based Online shops for switch adapted toys Inclusive Technology inclusive.co.uk/hardware/switch-adapted-toys Liberator liberator.co.uk/products/learning-and-inclusion-aids/switch-adapted-toys Other items/useful websites Living made easy livingmadeeasy.org.uk/children/play-%26-leisure-31470845 1309177 The play...

NEW interactive online patient tool for people with rare diseases to better understand their risk of Covid-19

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...

Genomics England Newborn Genomes Programme: help decide on principles for what conditions to look for

...deciding what principles should be used to choose conditions that will make up the initial list that babies enrolling in the pilot will be screened for. Online Workshops GEL are...

Unique Volunteering Experience - Joe Butt

...The online guides made by the team at Unique are not only helpful to the families affected by rare genetic conditions, but they are also incredibly helpful to people working...

IMAGINE ID: New Participants Urgently Needed

...the question parents most often ask when their child has a genetic condition; “So what does this mean for my child?” What is involved? Parents complete an online questionnaire (or...

New general advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders

...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...

Take Part: Research into parents’ experiences of discussing a genetic diagnosis with a young person with a learning disability

...online and I can arrange the interviews at a time convenient to you. The interviews would be recorded so that I can analyse the data and draw out any relevant...

New Research Study 16p11.2 duplication, 22q11.2 deletion and 1q21.1 deletion

...any further information, please contact Hannah via email- thomash66@cardiff.ac.uk or telephone- 02920 688757. Note. This study is not being run by Unique. Please address any queries to the research team....

Study on 16p11.2 deletion or duplication and 22q11.2 deletion or duplication

...your family can still participate in the study. What is involved with taking part? We will ask the parent to complete an online questionnaire about the child(ren) We will also...

IMPaCCT study: Investigating the impact of COVID-19 on caregivers and patients

Researchers at Queen’s University Belfast and University of Aberdeen are conducting an online international survey to gain an understanding of the impact COVID-19 is having on people with a rare...

New Adult Sibling Research Opportunity

...to their affected brother or sister Able to take part in an interview (online, phone or face-to-face) and provide consent for themselves Please pass on the information to anyone in...

The Be-Well Checklist: Helping parents, carers and professionals to change the behaviour and improve the wellbeing of people with severe learning disability and complex needs.

...Be-Well checklist in an online information event hosted by Unique on the 29th November 2020. Instead of charging for access to this presentation , we are asking people to support...

Intellectual Disability and Mental Health: Assessing Genomic Impact on Neurodevelopment (IMAGINE 2)

...the end of your participation, summarising our observations of your child. You will also see our colleagues at UCL where you will be asked to complete an online interview and...

Covid-19 Vaccinations (UK Only)

...Carer’s Allowance are now able to book a Covid vaccine online in the NHS portal: https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/book-coronavirus-vaccination/ or by calling 119. Further useful information can be found on the following pages:...

New Research Study: Children with 3q29 deletion or duplication

...activities, and answer some questions from us. We will also invite you to fill out some online surveys. We would also like to take a blood sample from everyone who...