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...reflect changes in the law or guidelines from appropriate regulators such as the Information Commissioner (www.ico.org.uk). Please check our website (www.rarechromo.org) regularly for details of any such changes. Any questions?...
READ MORE >...Mind https://www.mind.org.uk/ Young Minds https://youngminds.org.uk/ Samaritans If you need to talk through your feelings call 08457 90 90 90 (open 24 hours a day, charges apply) or email jo@samaritans.org Carers...
READ MORE >...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/ Guidance on shielding and protecting people...
READ MORE >...be a huge success….. Big Blue Bake Sale Kit and Poster https://www.rarechromo.org/files/Bakesalekit.pdf To download details about the Baking Kit, plus a poster to use for your bake sale, just click...
READ MORE >...Below are the brand new Awareness Week 2019 Logo and Facebook banner. To download for use on your own Facebook profile, please just click the logo (for use as your...
READ MORE >...(Registered Charity 1110661, Company Number 5460413) Please use the link above to view our online accounts for the financial year ending 31 March 2022. The report contains details on how...
READ MORE >...the USA. https://justlikeyoudolls.com/dolls with cochlear implants, etc US based Online shops for switch adapted toys Inclusive Technology inclusive.co.uk/hardware/switch-adapted-toys Liberator liberator.co.uk/products/learning-and-inclusion-aids/switch-adapted-toys Other items/useful websites Living made easy livingmadeeasy.org.uk/children/play-%26-leisure-31470845 1309177 The play...
READ MORE >...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/ NEW for 2022:...
READ MORE >...to other users of the site. Google Analytics These cookies are used to collect information about how visitors use our site. We use the information to compile reports and to...
READ MORE >...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...
READ MORE >...details, such as name, address, email address, financial details etc. on discussion forum but does not prevent you from doing so. Although users are required to login with a password,...
READ MORE >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:...
READ MORE >...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...
READ MORE >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....
READ MORE >...Tell us more Would you like you like to be sent a list of contact emails of other members we have registered who are affected by the same condition? Please...
READ MORE >...families, representing over 18,500 individuals with a rare chromosome disorder or an autosomal dominant single gene disorder. We have members in over 100 countries worldwide. With about 130 to 150...
READ MORE >...protein) to be altered to such an extent that it no longer functions, or functions at a much reduced level. LOH an abbreviation of ‘loss of heterozygosity’. LOH is used...
READ MORE >...advice. Families should consult a medically qualified clinician in all matters relating to genetic diagnosis, management and health. Unique mentions other organisations’ message boards and websites to help families looking...
READ MORE >...can find guidance from the BBC about: making your mouse easier to use using your keyboard to control your mouse alternatives to a keyboard and mouse increasing the size of...
READ MORE >...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...
READ MORE >...please email us at volunteer@rarechromo.org We will ask you to complete a short form and, if appropriate, offer a short, informal interview to ensure we meet each other’s expectations, answer...
READ MORE >...your or your child’s condition is not listed please contact us directly (help@rarechromo.org) to check if we have any members registered with that condition. We are a very small team...
READ MORE >...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...
READ MORE >...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/...
READ MORE >...www.rarechromo.org Applications in writing, with full CV, on email to craig@rarechromo.org to Craig Mitchell, Chief Operating Officer, Unique, by 5pm on Monday, June 7th 2021. Interviews will take place during...
READ MORE >...Swedish guide in its long and short versions, and I hope more will follow! Best wishes, Kristina Photo credit: HANS ODEBERG See our chromosome and gene disorder guides at https://www.rarechromo.org/disorder-guides/...
READ MORE >...to acknowledge and appreciate the time and expertise you’re sharing with them. Interested in getting involved? Find out more by visiting their website (www.mrcc.org.uk/education-engagement/werrare/) and send in your expression of...
READ MORE >...for parents and carers of medically complex children: https://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 door to advise visitors to your home of...
READ MORE >...we can further grow our knowledge and understanding of these rare conditions. Just visit www.rarechromo.org/donate and together we can help more families like our festive shining stars below. Alternatively, you...
READ MORE >...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...
READ MORE >...and shares their story about how Unique offers hope to families by showing them that they are never alone. Find out if Unique can support you and your family at www.rarechromo.org...
READ MORE >...What you tell us is confidential and will not be disclosed to anyone outside the research team. Your name will not be mentioned in any reports or papers, nor will...
READ MORE >...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...
READ MORE >...undiagnosed disorders including those associated with intellectual disabilities and neurodevelopmental disorders. ESHG-Y is the European Society of Human Genetics Young genetics specialists members network. View our information guides at www.rarechromo.org/disorder-guides...
READ MORE >...would like to book to attend the webinar, this is the link: https://www.eventbrite.co.uk/e/delivering-different-news-to-families-by-healthcare-professionals-tickets-245707306167 Please note. This is not being run by Unique. Should you have any questions, please email esther.mugweni@ihv.org.uk...
READ MORE >...click here to read a copy of the letter or post the following into your browser: www.rarechromo.org/files/dsletter21 In addition to Unique, the other organisations to have signed the letter are:...
READ MORE >...such a dedicated group of academics! As usual, all guides will be placed on our website at www.rarechromo.org/disorder-guides and will be freely available to anyone who may find them helpful....
READ MORE >...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...
READ MORE >...avoid bias, Beverly was appointed to the full-time role with Marion Mitchell providing part-time support. At 1,200 member families, the website www.rarechromo.org was launched and, in one sense, with Beverly,...
READ MORE >...mental health problem, you are not alone in feeling the way you do. Check out our wellbeing support page at https://rarechromo.org/wellbeing/ and also our crisis and support page at https://rarechromo.org/crisis-support/...
READ MORE >NHS England Genomic Medicine Service supported Unique’s Rare Chromosome & Gene Disorder Awareness Day in June 2022 by sharing information and family stories; highlighting the role genomics and the National...
READ MORE >...Unique was one of two patient organisations present, Sarah was able to represent the rare chromosome & gene disorder community to ensure our voice is heard and to discuss England’s...
READ MORE >...would take part in interviews and should be prepared to discuss their young person’s genetic diagnosis and how they have used the knowledge of this diagnosis to talk to the...
READ MORE >...law makes a provision for charities like Unique to continue our work to help those with disabilities and specifically to continue to use health information, including genetic data for example,...
READ MORE >...a powerhouse of activity. They do so much more than I ever realised or saw from the outside. Beverly also shared with me the wider picture of Unique; the role...
READ MORE >...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,...
READ MORE >...are conducting a study looking at Non-invasive prenatal testing (NIPT). They are inviting any women or couples in England, France or Germany who have been offered NIPT in pregnancy/ies to...
READ MORE >...was the word ‘genome’ created? 8. Name a radioisotope that has been used for radiolabelling in Sanger Sequencing: 9. How many members does Unique have (+/- 100)? 10. How many languages...
READ MORE >...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,...
READ MORE >...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...
READ MORE >...rare genetic variants associated with intellectual disability. Click here to read the full paper. A summary is also available in written and video format on the Imagine ID website: https://imagine-id.org/news/imagine-id-research-publication/...
READ MORE >...of the issues faced by Unique families, particularly in the early days. Please click here to read more about Anita. If you would like to contact her, please email anita@rarechromo.org ...
READ MORE >...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...
READ MORE >...take part, please email imagineID@cardiff.ac.uk for more information, or contact one of our researchers on the numbers below: Lauren: 02920 688065 Poppy: 02922 512286 Hannah: 02920 688316 More info: https://imagine-id.org/news/video/...
READ MORE >...even just supports a charity from time to time, why not think about nominating Unique? Just email craig@rarechromo.org if you have any questions or need some information about the charity....
READ MORE >...the diagnosis. It will also be useful for professionals, helping to explain things to patients, for example before they undergo an array CGH. You can view the animation here: https://youtu.be/s7WWd7zsCdU...
READ MORE >Have you received a genetic lab report and struggled to interpret it and understand what all the complex scientific language used actually means for you or your family member? If...
READ MORE >...fundraising, making a donation or if you have any skills that you feel may be of use to Unique. Email craig@rarechromo.org or call +44(0)1883 723306 Craig Mitchell BA(Hons), PGCE, MInstF(Dip)...
READ MORE >...my local pre-school. With the children getting older, I decided to retrain as a qualified book-keeper. Working at Unique is a great opportunity for me to use my new skills...
READ MORE >...counselling course and have volunteered on a crisis line. I have also helped run support groups for people with life-limiting conditions and am passionate about supporting them and their families....
READ MORE >I discovered Unique when my sister’s gorgeous youngest daughter, Tilly, was diagnosed with Tetrasomy 9p. While very little information was made available to her upon diagnosis, fortunately a friend of...
READ MORE >...these genetic changes there is very little information available for parents. Unique’s guides are not only written with information gathered from scientific literature and related databases but with information gathered...
READ MORE >...as IMAGINE ID (Intellectual Disability and Mental Health: Assessing the Genomic Impact on Neurodevelopment) Research Assistant and Study Coordinator at the University of Cambridge. 3,400 individuals with rare chromosome and...
READ MORE >...have any questions or would like to join or know more about Unique: sarah@rarechomo.org. Sarah Wynn PhD is the editor of the Unique website. This is an explanation of her...
READ MORE >...Unique as a trustee during 2014 because I wanted to use the skills I’d learnt to help an organisation which helped me. I have previously been Unique’s Chair of Trustees....
READ MORE >...my midwifery career, I was working in a department which offered screening and counselling for expectant mums, when an abnormality had been detected in a pregnancy. This is where I...
READ MORE >...of different disorders, helps us support families and professionals, match families with others and we’ve even used it to help families gain access to services and resources. I am Mum...
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