Understanding Rare Chromosome and Gene Disorders

Unique are Recruiting


We are recruiting a part-time Information Officer to provide support and information to families affected by rare chromosome and gene disorders. An excellent understanding of human genetics, genomics & medical terminology is essential and experience of counselling families with genetic/genomic disorders would be desirable.

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We Are Unique!


Unique is a small charity supporting, informing and networking with families living with a Rare Chromosome Disorder or some Autosomal Dominant Single Gene Disorders associated with learning disability and developmental delay, among other symptoms. Sound like your family? Do take time to explore our site, especially the Families area.

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New Covid-19 Guidance & Self-Isolation Resource Guide


Please click the button below for details of our self-help guide to Isolation, full of useful resources, and NEW general advice regarding Coronavirus (Covid-19) for patients with rare genetic disorders.

Covid-19 Update

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Data Protection & Privacy Policy

...on WorldPay’s secure site and we recommend that you consult WorldPay’s data protection policy on their website or, if you use Paypal, see the Paypal website. If using one of...

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COVID-19 General Advice

...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/ Guidance on shielding and protecting people who are clinically extremely vulnerable...

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Professionals

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Support Us

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Mental health & wellbeing

...call 08457 90 90 90 (open 24 hours a day, charges apply) or email jo@samaritans.org Carers UK Free helpline 0808 808 7777 www.carersuk.org/ UNIQUE’S PRACTICAL SUPPORT GUIDES You may also...

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Annual Reports

...use the link above to view our online accounts for the financial year ending 31 March 2019 The report contains details on how Unique is run and how and from...

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Gift ideas and useful websites

...Integration Disorder. Implay implay.co.ukTel: 0800 6125499 Implay is the UK’s leading Manufacturer of Soft Play Equipment, Crash Mats, etc. Micro Scooters micro-scooters.co.ukTel: 0333 3201030 Scooters for all ages.Based in the...

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Cookie Policy

...help us improve this site. The cookies collect information in anonymous form, including the number of visitors to the site, where visitors have come to the site from and the...

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Terms & Conditions

These Terms and Conditions apply to everyone using the Unique Members Area including social networks such as Facebook and Twitter. Unique believes that online social networks, chat rooms, message boards,...

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Families

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Disclaimer

This Web Site Copyright © Unique – The Rare Chromosome Disorder Support Group 2020 Although great care has been taken to ensure the accuracy of the information in this website,...

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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...

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Where can I get help and support when the Unique team is not available?

...UK.: https://giveusashout.org/get-help/ MIND have a list of other crisis services here: https://www.mind.org.uk/information-support/guides-to-support-and-services/crisis-services/helplines-listening-services/ You may also find Unique’s practical support guides helpful, in particular, our Carers Wellbeing and Self-Isolation guides: https://www.rarechromo.org/practical-guides-for-families/...

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Glossary

...on the content of the additional genetic material. Microdeletion a small deletion of DNA, usually less than 500,000 base pairs and not visible by chromosome staining (see deletion for further...

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Advertising Policy

The Unique website www.rarechromo.org does not carry advertising and none of the space or content has been sold or leased to any third party for the purpose of generating revenue....

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Resources

Do take a look around the site but to help you find your way around, here are quick links to some of our most popular pages:...

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Donation Failed

We're sorry, your donation failed to process. Please try again or contact site support.

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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...

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Awareness Week

...Click here to order edible rice paper toppers from www.mycupcaketoppers.co.uk/products/unique If you need some help or guidance, just contact Caroline on email to caroline@rarechromo.org Competition: Colour in Gene the Bear!...

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Equal Opportunities Policy

...will be given a copy of this policy and appropriate mechanisms will be put in place for monitoring purposes. In addition, it will be displayed on the organisation’s website, www.rarechromo.org...

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News

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.

...https://authors.elsevier.com/a/1c88o6EIwShwqA       Feedback Survey for the checklist https://www.surveymonkey.co.uk/r/RJKBP8W   Vagus Nerve Stimulation Could Help Treat Behavior in PWS   www.fpwr.org/blog/study-shows-vagus-nerve-stimulation-could-help-treat-behavior-in-pws Cerebra Legal Rights Service   www.cerebra.org.uk/get-advice-support/legal-entitlements-problem-solving-project/   From...

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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...

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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/...

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

...clear 10 point plan and information specifically for parents and carers of medically complex children: ht tps://www.wellchild.org.uk/2020/03/18/ten-ways-to-keep-my-child-withcomplex-health-needs-safe/. This includes a helpful link to a poster to put on your front...

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Translating Unique's Chromosome Disorder Guides

...of how she got involved. Hello, Unique families! My name is Kristina Runyeon-Odeberg, and I am one of around 7,000 people who populate the small village of Dalby, situated about...

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

...about the current needs expressed by patients and caregivers. If you have any questions please do not hesitate to get in touch at Julie.mcmullan@qub.ac.uk or visit https://www.qub.ac.uk/sites/RareDisease/News/IMPaCCtStudy-investigatingtheimpactofCOVID-19oncaregiversandpatients.html Survey link: https://www.surveymonkey.co.uk/r/IMPACCTsurvey...

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IMAGINE ID: New Participants Urgently Needed

IMAGINE ID is collecting information about children and young adults with a genetic diagnosis related to learning disabilities. The study hopes to recruit 5,000 families worldwide and wants to answer...

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Gift Ideas and Useful Websites

...you thoroughly check them out (including making sure the products are safe) before you buy anything or take any of the advice given. Click Here to go to the list...

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Unique over Christmas and the New Year

...will reopen on the 4th  January 2021.During this period, you may find the information on our website useful: www.rarechromo.org. We will still have some great content going out across our...

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Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19

...be made for education to continue at home. Please click this link below to view the latest guidelines: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19 If you are unsure if your child is clinically extremely vulnerable,...

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UK Rare Diseases Framework

...to address the health inequalities, improve the quality and availability of care, and improve the lives of people living with rare diseases. See the UK Rare Diseases Framework here: https://www.gov.uk/government/publications/uk-rare-diseases-framework...

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Scaling the Heights...

...very rare chromosome disorder currently effecting just under 600 people worldwide. KBG syndrome causes learning and developmental delays and disabilities. For me it means I have autism, ADHD, sensory processing...

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Join our Team: Unique are Recruiting!

...questions or would like any further information, including a job description or person spec, please contact Craig Mitchell, Chief Operating Officer, on email at craig@rarechromo.org or on 01883-723306 or visit...

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Unique's Christmas Colouring Competition!

...the world 🌍 To enter: Please donate a minimum of £1 at www.rarechromo.org/donate with the reason for donation as ‘Christmas Colouring Competition’ Take a photo or scan a copy of...

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*NEW* Christmas Cards from Unique!

...available to purchase, with all proceeds coming directly to Unique. They’re a great way to raise awareness of Unique and rare chromosome & gene disorders. Get yours now at www.christmas-cards.org.uk/unique...

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