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#StayHomeStaySafe Check out Unique’s guide for families, containing lots of Covid-19 related information, guidance, ideas, resources and sources of help. Includes education, health, therapies, activities and much more. Click Here...
READ MORE >...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...
READ MORE >...already got it. Click on the icon below to take you directly there. Craig Mitchell Chief Operating Officer Unique The Stables, Station Road West, Oxted, Surrey, RH8 9EE, UK Email:...
READ MORE >Find out how you can get involved to support us, from fundraising ideas to volunteer opportunities.......
READ MORE >...UK Free helpline 0808 808 7777 www.carersuk.org/ UNIQUE’S PRACTICAL SUPPORT GUIDES You may also find Unique’s practical support guides helpful, in particular, our Carers Wellbeing and Self-Isolation guides: www.rarechromo.org/practical-guides-for-families/ Where...
READ MORE >...books covering Going to the Dentist, Going to the Doctor, Going to the Restaurant, Going to the Supermarket, Going to the Hairdresser and Going Swimming. Feeling Happy, Feeling Safe kidscape.org.uk/Acolour...
READ MORE >...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...
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 >...an hour a day for 23 days, run a mile a day, wear blue and yellow, stay silent for 23 minutes a day, whatever you’re able to do. Ask people...
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 >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...
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 >...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...
READ MORE >...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...
READ MORE >...clinical experience shows us that when it comes to behaviour and wellbeing, the most important things to consider are: pain and discomfort, sensory sensitivity, anxiety, poor sleep, emotional control, impulsivity,...
READ MORE >...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...
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 >...pilot programme will aim to recruit 100,000 babies to gather this evidence, and GEL are working closely with parents, participants, the public as well as experts and representatives from rare...
READ MORE >...written and produced by Dr Elizabeth Forsythe, Dr Lara Menzies, Kelly Kohut, Dr Nicki Taverner, Professor Eamonn Sheridan and Dr Frances Elmslie, on behalf of the British Society for Genetic...
READ MORE >...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...
READ MORE >...the CEO, and Claire and Anna, who are both scientific communication officers. I was initially amazed at how small the organisation is, for so few people to produce so many...
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 >Buy your Christmas cards from Unique and you’ll be directly helping those with rare chromosome and gene disorders. We have brand new, colourful and very festive designs this year, something...
READ MORE >...don’t know the answers have a guess, you never know! Please forward this quiz to any other genetic professionals (medics, scientist, academics, family history coordinators, secretaries, administrators, students etc) who...
READ MORE >...Unique’s work doesn’t just benefit a newly diagnosed families, but by developing greater understanding, knowledge and awareness, it benefits all those affected whether they were diagnosed last week, last year...
READ MORE >...include A guide to a clinical genetics appointment, what to do after receiving a diagnosis, communication, sleep issues and transitioning to adulthood. To view and download the guides, click here...
READ MORE >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...
READ MORE >...email Grainne Colligan on grainnec@safh.org.uk, Dr Saghira Malik Sharif on saghiram.sharif@nhs.net or Dr Shwetha Ramachandrappa on Shwetha.Ramachandrappa@gstt.nhs.uk. Your contribution will shape the research we do and how we communicate it....
READ MORE >**UPDATE 31st October 2022: This research is now closed for recruitment** One of our Information Officers at Unique, Francesca Wicks, is launching a new research project focusing on understanding the experiences...
READ MORE >...develop their practice in this area. Clare says: “Hi, My name is Clare Jacobs and I am in the final year of studying to become a genetic counsellor, I am...
READ MORE >...not need to have a diagnosis of 16p11.2, 22q11.2, 1q21.1 deletion or duplication. If there is no sibling who can take part, your family can still participate in the study....
READ MORE >Study title: Dissecting the effects of genomic variants on neurobehavioral dimensions in CNVs enriched for neuropsychiatric disorders (DiGEN) About the study We are a research team based across Cardiff University...
READ MORE >...2p16.3 (NRXN1)deletion, 3q29 deletion or duplication, 9q34 deletion (EHMT1), 15q11.2 deletion or duplication, 15q13.3 (CHRNA7) deletion or duplication, 15q11-q13 deletion or duplication, 16p11.2 deletion or duplication, 22q11.2 deletion or duplication...
READ MORE >...children and young people’s behaviour and inform the care of families, both now, and in the future. What is involved with taking part? We would love to see you and...
READ MORE >...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...
READ MORE >We’re sending extra special thanks today to our friends at ERN-ITHACA and ESHG-Y and Dr Rūta Marcinkutė, a native Lithuanian speaking senior clinical fellow at Guy’s and St Thomas’ in London,...
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 >Students from the Tbilisi State Medical University involved in the Translation Project We were very excited to have recently been contacted by Prof. Tinatin Tkemaladze, MD and her team from Tbilisi,...
READ MORE >⭐ Our popular Christmas Colouring Competition is here! ⭐ 🎄 Print off the photo and get colouring! 🌈 Open to everyone of all ages & abilities, wherever you are in...
READ MORE >Have you had an experience of NIPT (non-invasive prenatal testing)? Researchers at the Ethox centre (a centre for medical ethics at the Nuffield Department of Population Health, University of Oxford)...
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 >...R Rare Group, you’ll also, meet other people affected by rare conditions, find out more about the latest developments in rare conditions and, of course, be offered £25 an hour...
READ MORE >...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...
READ MORE >...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...
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 >...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 >...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 >...determined, so strong, and nothing fazes her. We have been supported by Unique from around 20 weeks old. We would not be here today without Unique. Unique have introduced us...
READ MORE >I initially became involved with Unique shortly after my second daughter, India, was diagnosed with an unbalanced translocation (duplication 18q21.1 to qter, deletion 18p11.32). At the time she was three...
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