Understanding Rare Chromosome and Gene Disorders

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Donate

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Professionals

Resources & information for professionals working with those affected by Rare Chromosome and Gene Disorders....

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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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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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Mental health & wellbeing

...link: www.bacp.co.uk/search/Therapists GENERAL SUPPORT There are also many organisations that you can turn to for support; Mind https://www.mind.org.uk/ Young Minds https://youngminds.org.uk/ Samaritans If you need to talk through your feelings...

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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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Families

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

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Gift ideas and useful websites

...Total Sensory totalsensory.co.ukBased in the UK Sensory Plus sensoryplus.co.ukBased in the UK Jabadao jabadao.orgBased in the UK Rompa rompa.comBased in the UK Spacekraft spacekraft.co.ukBased in the UK Sensory Toy Warehouse...

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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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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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Unique's Funday Friday | 19th June 2020

...our normal! People living with a disability and their families will be well acquainted with the need to adapt to restrictions, the challenges with access and taking extra precautions during...

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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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Equal Opportunities Policy

...aim to be an inclusive organisation in which individual differences are recognised and valued and this policy is intended to ensure that all members, member families, potential members & their...

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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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Cookie Policy

...pages they visited. Click here for an overview of privacy at Google For further information please email info@rarechromo.org or rarechromo@aol.com Last edited by Beverly Searle BSc(Hons) PhD CBiol MRSB 5th...

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Terms & Conditions

...your Unique login details to anyone else. Any message you post on our forum is considered to be ‘information‘ and is recorded by us. This information is only retained for...

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Annual Reports

...Craig Mitchell Chief Operating Officer Unique The Stables, Station Road West, Oxted, Surrey, RH8 9EE, UK Email: Craig@rarechromo.org Last edited by Beverly Searle BSc(Hons) PhD CBiol MRSB 5th January 2018...

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Practical Guides for Families

...a new topic added to this range of guides, please let us know by emailing marion@rarechromo.org with your ideas. To support our work in this area to help us produce...

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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.

...does this. The Be-Well Checklist is currently being updated based on the feedback provided and the final version will be uploaded here when it’s available. Professor Chris Oliver presented the...

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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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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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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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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

...the added variable of stress, written information might be even harder to digest. I found the Unique site, downloaded the information guide and looked at the scope, found Claire Andersen’s...

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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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Unique's range of free to downloadΒ  '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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Gift Ideas and Useful Websites

Our Family Support Officer Marion has created a list of books, toys, websites, clothing and other items that we’ve heard about or Unique members have said their children like and...

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UK Rare Diseases Framework

...patient organisations formally identified and refined priorities and underpinning themes for the new framework. These ideas were further tested through stakeholder engagement with patient organisations, clinicians, researchers and industry representatives...

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Scaling the Heights...

...going along the same journey as us and feel as though we have discovered our extended family. So to raise money for this wonderful charity I am going to walk,...

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

New guidance is available for people living in England who were previously advised to shield. Children who are clinically extremely vulnerable are advised not to attend school. Appropriate arrangements should...

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Paydata: Target Smashed!

...Helen Lallyette had been helped by Unique and she wanted us to benefit from their fundraising. It was an extra special year as Paydata celebrated their 20th anniversary. Click here...

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Paydata Ltd Supporting Unique

...planned. If your employer supports a charity, why not nominate us. We can help with any information or support you need. Just drop us a line on email to craig@rarechromo.org...

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People

Craig Mitchell BA(Hons), PGCE, MInstF(Dip)

...in HR, operations management and communications and I have been with the charity since 2008, having previously been a Unique member. I am married to Gemma and have two girls:...

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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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