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COVID-19 General Advice

...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...

Unique's Funday Friday | 19th June 2020

...2nd and 3rd place. 9am (BST) Quiz: https://www.virtualquizevents.com/quiz/friday-funday-15-minute-quiz/ 5pm (BST) Quiz: https://www.virtualquizevents.com/quiz/friday-funday-15-minute-quiz-2/ Mindfulness Taster Session Join in our Mindfulness Taster Session on Zoom – from 19.45 to 20.30 BST on...

Families

Information & support for families & individuals affected by Rare Chromosome and Gene Disorders.......

Annual Reports

...plans to continue to develop the charity. Annual Report and Accounts 2020]}** (Registered Charity 1110661, Company Number 5460413) Please use the link above to view our online accounts for the...

Disclaimer

Gift ideas and useful websites

...08451 205 204 . Based in the UK Personalised children’s books https://kck.st/2QHrDAf The Treehouse at Number 9 books and a musical story App. https://treehousegenies.com/about-treehouse/ Toys TFH specialneedstoys.com/ukBased in the UK...

Disorder Guides

...you are interested. Information is not intended to replace professional medical advice. Before downloading a guide, we recommend reading our Disclaimer and Copyright Notice. (Page last updated 2nd October 2020]}**)....

Practical Guides for Families

...families, please click here. Before downloading any of our guides, we ask you to please read and adhere to our Disclaimer and Copyright Notice. (Page last updated 30th March 2020]}**)...

News

2020 Virtual Marathon...an experience we will never forget!

2020]}** Virtual Marathon…an experience we will never forget! This year’s London Marathon was a London Marathon like no other! It was the 40th running of this world famous and prestigious...

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 COVID19 for people with rare genetic/genomic disorders, including rare chromosome and gene disorders. These information sheets were kindly...

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.

...need or how they feel. These things can each cause particular behaviours and affect someone’s quality of life and they are often linked with each other. Making sure that these...

Covid-19 Vaccinations (UK Only)

...from Contact: https://contact.org.uk/advice-and-support/covid-19/children-with-health-needs/covid-vaccination-your-questions-answered/ More information about the Covid-19 vaccination programme is available here: https://www.gov.uk/government/publications/priority-groups-for-coronavirus-covid-19-vaccination-advice-from-the-jcvi-30-december-2020]}**/joint-committee-on-vaccination-and-immunisation-advice-on-priority-groups-for-covid-19-vaccination-30-december-2020]}**#fn:3 Why you should register with your GP as a carer: https://www.carersuk.org/help-and-advice/health/looking-after-your-health/your-gp Unique’s Carers Wellbeing guide: https://www.rarechromo.org/practical-guides-for-families/...

IMAGINE ID: New Participants Urgently Needed

...via phone/ face-to-face) about their child and soon after receive a personalised summary report. The report may be useful to help with assessments for school, services or specialist treatments. Avery...

Discussion groups to understand community attitudes to research on rare genetic disorders in British Pakistanis

The British Pakistani community has a high incidence of rare genetic disorders. Families affected by these disorders can spend years in search of a precise genetic diagnosis. Research into rare...

Rare Chromosome Disorder Awareness Day - Quiz for Professionals

...support Unique. To participate, follow the instructions below: Visit Flora’s Just Giving page and make a donation: https://www.justgiving.com/fundraising/RareChromoQuizForPros Complete the quiz below and email your answers to Flora at Flora.joseph@nhs.net – if you...

Unique over Christmas and the New Year

Our staff are working from home in line with government guidance but after a challenging year, we will be taking a break over Christmas from the 24th December 2020]}** and...

Translating Unique's Chromosome Disorder Guides

...did not take me long to realize I could focus on the area of medical terminology and how terms differ between English and Swedish. I also added readability after a...

A Unique Experience

...genetic counselling. She is due to qualify as a registered genetic counsellor in 2020]}**. Since the beginning of my training I have heard about Unique. In NHS clinical genetics departments,...

National Conversation on Rare Disease: Make Sure Your Voice is Heard

The existing UK rare disease strategy finishes at the end of 2020]}**. The government intends to produce a “rare disease framework” to follow on from this strategy to improve the...

People

Sophie Sainty

My son Max has a duplication 9p23.1p13 and deletion 9p23.1p23.3) and I also have a younger daughter. Unique changed our lives when we were told shortly after his birth of...