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...party companies to provide services on our behalf. This could include services such as bulk email services, in order that we can communicate with members and supporters in the most...
READ MORE >...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...
READ MORE >...85258 is a free, confidential, anonymous text support service. You can text from wherever you are in the 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/...
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 >...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 >...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 >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...
READ MORE >...www.unique-chromo-shop.myshopify.com/ Other ways to get involved could include: •Snap a photo of your child and share on all your social media accounts using #uniquenotalone #rarechromo #rarechromoday •Share a video telling...
READ MORE >...community. Please complete the form below and make sure to tick/check the consent box at the bottom to allow us to contact you. One of our helpline team will be...
READ MORE >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...
READ MORE >...secret, copyright, or other proprietary rights of any party; (3) constitutes advertising in any form, including, but not limited to, advertising of products or services for personal or commercial gain,...
READ MORE >...ancestors. This increases the chances of having the same genetic change on both copies of a gene or chromosome, so recessive disorders are more common. Consanguineous commonly used to describe...
READ MORE >...disabled and very medically complex; sadly we lost her when she was 21 years old but we are all very proud to have had her in our lives. Beverly’s son...
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 >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 >...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!...
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 >Cerebra and Cardiff University are working on a project aimed at improving mental health information and services for children with rare genetic conditions. Cerebra are a national charity who work...
READ MORE >...providing information and support to people seeking a helping hand as they come to terms with an unfamiliar and complex diagnosis, Unique represents members’ interests and meets challenges with confidence....
READ MORE >We have been asked to share the following by Dr. Alison Kay, Research Genetic Counsellor, MRC Weatherall Institute of Molecular Genetics at the University of Oxford): Hello, my name is...
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 >...in numbers, is more than compensated for in the passion, experience, resilience and care that is poured in this great charity by a few remarkable people. Shortly after seeing Arti,...
READ MORE >We are sharing this on behalf of Emma Carter at Cardiff University School of Medicine: We are recruiting parents/guardians of a child who is affected by a developmental disorder, who...
READ MORE >We have been asked to share details of some new research being undertake by Emma Carter, a Genetic Counselling student at Cardiff University. The research is Exploring whether the UK Genetic...
READ MORE >Researchers at Queen’s University Belfast and University of Aberdeen are conducting an online international survey to gain an understanding of the impact COVID-19 is having on people with a rare...
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 >The more eagle-eyed among you will have seen actor Adam Astill in shows like Eastenders and Holby City (and as Mr Hammond in Andy’s Safari Adventures – one for the...
READ MORE >About our study We are a research team based across University College London and Cardiff University and we are interested in the experiences of individuals with rare genetic disorders. We...
READ MORE >Joe Butt – Unique Volunteer Throughout my education, I’ve come across Unique many times. Studying genetics at university, I learnt about the many conditions that affect families across the world....
READ MORE >...with 3q29 deletion or duplication About our study We are a research team based across University College London and Cardiff University and we are interested in the experiences of individuals...
READ MORE >...real difference to research and healthcare services in rare conditions. It’s only through your experiences that researchers and healthcare professionals will know what works, what needs improving and most importantly,...
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 >...English. Many Swedes are good at speaking and understanding English on a daily basis, but when it comes to reading or writing, that might be a whole different story. With...
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 >...support Unique. To participate, follow the instructions below: Visit Flora’s Just Giving page and make a donation: https://www.justgiving.com/fundraising/RareChromoQuizForPros Complete the quiz below and email your answers to Flora at Flora.joseph@nhs.net – if you...
READ MORE >...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...
READ MORE >...Paris on 12th April. In addition, she has given two community genetics teaching sessions for 2nd year medical students at University College, London. Unique team members are also involved in...
READ MORE >We’ve been asked by our friends at the University of Sheffield to share details of a new research project, looking at communication abilities in children with rare genetic conditions. They...
READ MORE >...Cardiff for your children to have some brain scans. In Cardiff, your children will complete some computerized puzzles and quizzes. Your children will also complete some balance and ball games...
READ MORE >...Your children will also complete some computerized puzzles and quizzes. We will ask for a blood and/or saliva sample to help us to further understand the underlying causes of the...
READ MORE >BINGO stands for Brain and Behaviour In Neurodevelopmental disorders of Genetic Origin. BINGO is a research project involving researchers from the MRC Cognition and Brain Sciences Unit (MRC CBU), University...
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 >...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 ...
READ MORE >...evolving and their approach to analysis. Click here to read a highlights blog and find a list of the Q&As. You can view a recording of the webinar here: https://vimeo.com/775813073/b6f9e19ccb...
READ MORE >...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...
READ MORE >A great friend of Unique, Prof. Dr. Thomas Liehr, University Hospital Jena, Institute of Human Genetics (in Germany) has written two new books! One on ‘Small Supernumerary Marker Chromosomes’ (sSMCs)...
READ MORE >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’...
READ MORE >We are sharing an opportunity for families to take part in some research run by Clare Jacobs at Cardiff University. Clare is studying to become a Genetic Counsellor and is...
READ MORE >Researchers at the University of Oxford are exploring the difficulties some children can have in understanding conversation. In order to learn more about these communication problems, they are inviting families...
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 >Researchers at the University of Michigan in Ann Arbor, MI, USA, are conducting research on Complete Trisomy 5p. Their aim through this research is to improve the lives of children,...
READ MORE >...Cardiff University. Recruitment to the study will primarily be through Unique and Francesca is hoping to interview between 10-15 people in total. This brand new research study will focus on...
READ MORE >...25 years who has emotional outbursts at least once a month, you’re invited to take part in a research study being conducted at the School of Psychology, University of Birmingham....
READ MORE >...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:...
READ MORE >...this opportunity to translate the guide, that was such a beautiful surprise to me and beyond any doubts I wanted to collaborate and help as much as possible. Coming from a...
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 >...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 >...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...
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 >...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 >I’m Unique’s Chief Operating Officer and work on fundraising, administration and infrastructure, basically anything to support the frontline staff as they deliver services to families and professionals. My background is...
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 >Following completion of my English degree at Durham University, I took a teachers’ training diploma. During the course of that training I had many weeks of student teaching experience some...
READ MORE >...with a very similar chromosome disorder gave us hope by telling us all the things that he might do. As a former City lawyer, I have very much enjoyed throwing...
READ MORE >...it seemed like the perfect match. In February 2017, I officially joined the Unique team as a part-time scientific communications officer, primarily involved in updating and writing new guides. One...
READ MORE >I was very happy to have been given the opportunity to join Unique in 2015 as one of the Information Officers. I am responsible for researching and writing or updating...
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...
READ MORE >...born with a chromosome deletion! Jenny was profoundly disabled and very medically complex; sadly we lost her when she was 21 years old but we are all very proud to...
READ MORE >...role in writing the BBC television comedy drama series ‘There She Goes‘ and how this has helped to shine a light on the rare condition community. Click here to listen...
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