Understanding Rare Chromosome and Gene Disorders

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Data Protection & Privacy Policy

...have collected, stored or processed your data and wish to make a complaint to a supervisory authority, please contact the office of the Information Commissioner (www.ico.org.uk) Who has access to...

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Gift ideas and useful websites

...UK Toyella toyella.com/is a lovely website. Unusual gifts you cant buy elsewhere in the UK Mastermind toys mastermindtoys.com/ Based in Canada. Toys & Games for Developmental Delay fatbraintoys.com/search.cfm?q=developmental+delay. Based in...

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Donate

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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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Support Us

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Professionals

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Mental health & wellbeing

...with expertise in supporting parents of children with additional needs. www.affinityhub.uk BACP British Association for Counselling and Psychotherapy approved therapists can be found at the following link: www.bacp.co.uk/search/Therapists GENERAL SUPPORT...

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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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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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Families

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Awareness Day 2021

...wristbands and discreet pin badges are available from our online shop. Click here or visit www.unique-chromo-shop.myshopify.com/ Other ways to get involved could include: •Snap a photo of your child and...

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Terms & Conditions

...links to external commercial websites, junk mail, “spamming,” chain letters, or any other form of unauthorised solicitation; (4) contains software viruses or any other computer code or files that are...

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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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Cookie Policy

Use of Cookies by Unique Cookies are small text files that are placed on your computer by websites that you visit. They are widely used in order to make websites...

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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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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

Introduction Unique – Rare Chromosome Disorder Support Group is fully committed to equality of opportunity and service provision and is opposed to all forms of unfair or unlawful discrimination. We...

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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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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

...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

...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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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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Scaling the Heights...

...to do something to help a little bit.” A massive thank you to Leo and Katie and GOOD LUCK!! You can support Leo at: https://www.justgiving.com/fundraising/katie-fox16 Leo – a true #shiningstar...

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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...

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Unique's range of free to download  'practical' guides for families

...download and focus on more generic topics which are relevant to families caring for a child or adult with a rare chromosome or gene disorder. Topics covered include A guide...

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The Law is Changing and we've Updated our Privacy Policy

...‘GDPR’ comes into force. If you’re a member of Unique, we already have your consent to store and process the personal information you gave us when you joined. The new...

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Gift Ideas and Useful Websites

...we’re sharing in case other families would find them useful too. We’re not endorsing any of the products or companies included so please make sure you thoroughly check them out...

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KBG Syndrome Family Day (UK)

...13th July 2019 at Wills Memorial Building. Please click here to open a flyer about the event. The event is by registration. To register, you need to email KBGfamilyday@gmail.com  ...

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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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Translating Unique's Chromosome Disorder Guides

...the final comments and sent the complete long and short version of the guide back to Claire…only to find out that Unique was sadly affected by the Covid-19 pandemic and...

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UK Rare Diseases Framework

...rare disease community. The survey received a fantastic 6,293 responses from the community! Using the results from the survey, an Editorial Board of policy officials, representatives from clinical practice and...

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Join our Team: Unique are Recruiting!

...contact for existing members and professionals. In responding to queries you will use information from our comprehensive database, as well as researching various published materials. Highly motivated and flexible, you...

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Unique's Christmas Colouring Competition!

...your completed colouring competition and email it to Arti at arti@rarechromo.org Please remember to add your name & age on the colouring competitions DEADLINE: Monday 14th December 5pm (GMT) Categories:...

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News from Georgia

...done completely voluntarily and in their own time. We would like to say a great big thank you to everyone involved … Georgian families are very lucky to have such...

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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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