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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 >...Please use the link above to view our online accounts for the financial year ending 31 March 2023. The report contains details on how Unique is run and how and...
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 >These Terms and Conditions apply to everyone using the Unique Members Area including social networks such as Facebook and Twitter. Unique believes that online social networks, chat rooms, message boards,...
READ MORE >...door/Unique Shielding Poster- French TranslationDownload Downloadable warning poster for your front door/Unique Shielding Poster- Spanish TranslationDownload New general advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders 14th April...
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 >...is your ethnic group? (Choose one option that best describes your ethnic group or background) WhiteMixed / Multiple ethnic groupsAsian / Asian BritishBlack / African / Caribbean / Black BritishOther...
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 >...note, we are a small charity with limited funding, and so are dependent on clinicians volunteering to help us write, verify, update and translate our guides. NB, please check the...
READ MORE >...for example to verify and translate our guides, to write the text for some of our single gene disorder leaflets and to act as a professional sounding board. Over these...
READ MORE >...Awareness week is the best time to do that. We’ll provide you with all you need and even tell you what to say….We’ve kept it deliberately brief and jargon-free so...
READ MORE >Get in Touch Your name Your email Your message This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply....
READ MORE >Unique’s former Chief Executive Officer Beverly Searle BSc(Hons) PhD CBiol MRSB In August 2021, Beverly retired as CEO of Unique after more than 30 years of service to the charity....
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 >...craig@rarechromo.org ….. he’ll be pleased to hear from you. Wear that you care! Our awareness wristbands and discreet pin badges are available from our online shop. Click here or visit...
READ MORE >...omit any zeroes (0) at the start of the number. Choose your own online name and password. Not yet a registered Unique family member? Just go to the Become A...
READ MORE >...few. We have seen professionals offering telehealth appointments via phone calls and/or video chats and schools offering online tutorials. A lot of these adaptations were not provided to us prior...
READ MORE >A new patient interactive tool that allows people with rare diseases to better understand their risk of Covid19 has now been released. It is the result of a collaboration between...
READ MORE >...The online guides made by the team at Unique are not only helpful to the families affected by rare genetic conditions, but they are also incredibly helpful to people working...
READ MORE >...deciding what principles should be used to choose conditions that will make up the initial list that babies enrolling in the pilot will be screened for. Online Workshops GEL are...
READ MORE >...experiences of receiving a variant of uncertain significance (VUS or VOUS) diagnosis for your child. Understanding families’ experiences and perspectives is vital for the development of best practice and ensuring...
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 >...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 >Vacancy – Part-Time Information Officer (Family Support) Unique provides a specialist information and support service to families affected by rare chromosome disorders, copy number variants and autosomal dominant single gene...
READ MORE >...2 week window for me to join them. I wanted to learn more about the services that Unique provides families affected with rare chromosome disorders, as well as how professionals...
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 >...families affected by developmental disorders which in turn may help UK Genetics Services tailor their service delivery to better address these. To participate in this study, or for further information,...
READ MORE >...37.8 °C), seek clinical advice using the NHS 111 online coronavirus service (https://111.nhs.uk/covid-19/). If you do not have access to the internet, call NHS 111. Do this as soon as...
READ MORE >...Be-Well checklist in an online information event hosted by Unique on the 29th November 2020. Instead of charging for access to this presentation , we are asking people to support...
READ MORE >Unique has joined with a coalition of 9 charities to write a letter to Dr. Liam Fox and a number of other MPs about the proposed Down Syndrome Bill. Please...
READ MORE >...decided to hold a virtual event instead. Deciding to continue our endeavours was the best decision we could have made. Last Sunday we completed the 26.2 mile challenge ‘our way’...
READ MORE >...find better treatments. A natural history study is the best way to study traits of individuals affected by Complete Trisomy 5P, and how these traits progress over time. A natural...
READ MORE >...7p22.1 . This deletion has effected much of his development, but as a family we have learned how to adapt and push him to be his best! Theodore has been...
READ MORE >...different to our usual celebrations, we wish you all a very Merry Christmas and a Happy New Year. Please stay safe. With very best wishes from Unique’s Staff & Trustees...
READ MORE >...so, we would like your advice on how best to communicate our research and findings within the community. Confidentiality: We are aware that this discussion will focus on sensitive topics....
READ MORE >...Services meet the support seeds of families affected by developmental disorders and Emma is looking for Unique member families who might like to take part. She writes: The research question...
READ MORE >...or would like help interpreting your/your child’s genetic report, please get in touch with Unique (help@rarechromo.org) or contact your local Genetics service. You may also find Unique’s Glossary of Genetic...
READ MORE >...study, and people who sign up for the research via the NHS Genomic Medicine Service. What would Genomics England like to find out? Genomics England are looking to better understand...
READ MORE >...your family can still participate in the study. What is involved with taking part? We will ask the parent to complete an online questionnaire about the child(ren) We will also...
READ MORE >...online and I can arrange the interviews at a time convenient to you. The interviews would be recorded so that I can analyse the data and draw out any relevant...
READ MORE >...any further information, please contact Hannah via email- thomash66@cardiff.ac.uk or telephone- 02920 688757. Note. This study is not being run by Unique. Please address any queries to the research team....
READ MORE >...to their affected brother or sister Able to take part in an interview (online, phone or face-to-face) and provide consent for themselves Please pass on the information to anyone in...
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 >...the end of your participation, summarising our observations of your child. You will also see our colleagues at UCL where you will be asked to complete an online interview and...
READ MORE >...Carer’s Allowance are now able to book a Covid vaccine online in the NHS portal: https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/book-coronavirus-vaccination/ or by calling 119. Further useful information can be found on the following pages:...
READ MORE >...activities, and answer some questions from us. We will also invite you to fill out some online surveys. We would also like to take a blood sample from everyone who...
READ MORE >I was very happy to have been given the opportunity to join Unique in 2015 as one of the Information Officers. I help research, write and update Unique’s information guides...
READ MORE >Hi, I’m Sarah. I’m really pleased to have recently taken on the role of CEO of Unique, following Beverly’s well-earned retirement after many years of dedicated service. I’ve been involved...
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 >...story and how her diagnosis enabled them to connect with other parents of children with similar conditions through the charity Unique. Shaun and Sarah also discuss their role in writing...
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