Understanding Rare Chromosome and Gene Disorders

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Data Protection & Privacy Policy

...diagnosis, syndrome name if applicable, genetics laboratory report, genetic analysis result, genotype, medical information, symptoms, phenotype, other personal information about their family, medical, educational and social care correspondence, health, development...

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COVID-19 General Advice

...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....

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Support Us

Find out how you can get involved to support us, from fundraising ideas to volunteer opportunities....

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Professionals

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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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Families

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Annual Reports

...Charity 1110661, Company Number 5460413) Please use the link above to view our online accounts for the financial year ending 31 March 2018 The report contains details on how Unique...

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Awareness Week

...awareness and doing some fundraising: eat cakes, dress down, run, walk or push, skydive…..get involved! For more details about the themes of the day, click here Unique’s Big Blue Baking...

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Terms & Conditions

...that: (1) is unlawful, harmful, threatening, abusive, harassing, defamatory, libellous, invasive of another’s privacy, vulgar, obscene, racially or ethnically offensive, or otherwise objectionable; (2) infringes on any patent, trademark, trade...

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

...EMOTIONAL SUPPORT: CALL The Samaritans on 116 123 (any time, night or day, throughout the year) EMAIL The Samaritans: jo@samaritans.org (24hr response time) More information about The Samaritans here: https://www.samaritans.org/how-we-can-help/...

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Members

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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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Unique Family Members' Area Registration

If you have already joined Unique’s family membership, then you can access this family members-only area by completing all the details below. When entering your membership number, make sure to...

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Equal Opportunities Policy

...of disability, race, colour, age, marital status, gender, sexuality, religion, nationality, ethnic or national origins shall not be tolerated. All decisions on membership and provision of services will be made...

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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.

...suggest a donation of £5-£10 but whatever you can manage, however small, would make a real difference. To Donate today, please visit www.rarechromo.org/donate and then scroll down to click on...

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

...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...

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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

...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...

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IMAGINE ID: New Participants Urgently Needed

...purchase online. We need your help! We have successfully recruited over 2,100 participants but we urgently need more… To be eligible, individuals must be aged 4 and over, have a...

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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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Have you received a variant of uncertain significance for your child?

Sarah Wynn, one of Unique’s Information officers is also studying for a MSc in Genetic and Genomic Counselling at Cardiff University and is undertaking a research project looking at parents’...

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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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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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This week is Chromosome & Gene Disorder Awareness Week....

...theme, such as ‘Telling Tuesday and ‘Warrior Wednesday’. There are lots of different ways to get involved, from simply sharing our social media posts, to distributing leaflets, to holding a...

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A Unique Experience

...networks all over the world. Add to that; the helpline, all the conferences, events like family days, and the regular newsletter and magazine, Unique is a small but mighty organisation,...

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

...their home town in Hertfordshire and have so far raised an incredible £10,500! Nikki takes up the story: “Our daughter Niamh has NAA10 Syndrome, she is one of 9 in...

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Today's Shining Star

...of 7p22.1 . This deletion has effected much of his development, but as a family we have learned how to adapt and push him to be his best! Theodore has...

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

...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, please discuss this with your GP or health professional....

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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...

...run, jump, spin and twirl my way to the top of Mount Everest! Leo’s Mum, Katie, says, “Leo is very excited about getting a medal when he reaches the virtual...

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Unique's Christmas Colouring Competition!

...Adults (18+ years) Children:2-4 years 5-8 years 9-11 years 12-15 years 16-18 years Judges will select one lucky winner to win a small prize. 5 runner-ups will have their colouring...

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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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People

Louise Jeffree

...have two children, Emma aged 12 and Henry aged 9 and for the last few years, whilst they were little, I worked part-time as an Administration and Finance Officer for...

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Beverly Searle BSc(Hons) PhD CBiol MRSB

Hello! I’m the CEO and have been passionately involved with Unique since the birth of my daughter Jenny in 1990, first as a volunteer and since 1999 as a staff...

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Marion Mitchell

...inverted duplication 15pterq14 (more widely known as isodicentric or idic 15). In 1996 (pre-internet) I became Information Officer for the group, hand-writing letters to newly joining families; at that time...

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