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Resources & information for professionals working with those affected by Rare Chromosome and Gene Disorders....
READ MORE >Find out how you can get involved to support us, from fundraising ideas to volunteer opportunities....
READ MORE >...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 >...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 >...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 >...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 >...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 >Information & support for families & individuals affected by Rare Chromosome and Gene Disorders.......
READ MORE >...people haven’t heard about chromosome & gene disorders…..yet! This week is about changing that. Help us #shinebrighttogether for all those living with and affected by rare chromosome and gene disorders.......
READ MORE >...charity. Annual Report and Accounts 2021 (Registered Charity 1110661, Company Number 5460413) Please use the link above to view our online accounts for the financial year ending 31 March 2021....
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 >...Text SHOUT to 85258 for immediate support, 24/7. Shout 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...
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 >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 >...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 >...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 >...comment belowPrefer not to answer/can't remember How did you hear about Unique? More Information. Thank you. We will be in touch shortly. If you have not received an email from...
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 >...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 >...to help us. In fact, we have volunteers all over world. From raising awareness and helping families in your local area as one of our local contacts, to shaking a......
READ MORE >...you are interested. Information is not intended to replace professional medical advice. Before downloading a guide, we recommend reading our Disclaimer and Copyright Notice. (Page last updated 2nd October 2020).......
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 >...breastfed. She has mobility issues but thrives on competition, works in a special school managing children with severe learning disabilities and autism and leads an independent, active life. We were...
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 >...you are outside the UK, please check your country’s guidelines (e.g. for the US: https://www.cdc.gov/coronavirus/2019-ncov/index.html ). Please see the WellChild website for a clear 10 point plan and information specifically...
READ MORE >...working with an organisation called Involve to recruit representatives from the rare disease community to engage in a series of online workshops that will allow a diverse range of people...
READ MORE >...30,000 people worldwide costs about 300 Grand. I mean that’s your average Premiership footballer’s weekly wage. Find out more and donate by going to Unique’s website www.rarechromo.org . Thank you!...
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 >...small prize. 5 runner-ups will have their colouring competitions pictures posted on Unique’s website and social media pages. Any questions? Email Arti at arti@rarechromo.org Happy Colouring! Unique’s-Christmas-Colouring-Competition (JPEG)Download Unique’s-Christmas-Colouring-Competition (PDF)Download...
READ MORE >...genetic counselling. She is due to qualify as a registered genetic counsellor in 2020. Since the beginning of my training I have heard about Unique. In NHS clinical genetics departments,...
READ MORE >...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 interest by 5.00pm on Sunday 11th February 2024....
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 >...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 >Meet Lucy and her Mum, Martina! Lucy has a 10q26.3 deletion and 2q35 duplication. Martina says, “Lucy is an absolute joy. She is a wonderful little girl. She is so...
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 >...course!). Leo’s mum Katie sent us this: My name is Leo. I am 8 and a half. 2 and a half years ago I was diagnosed with KBG Syndrome, a...
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 >...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 >...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 >...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 >...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 >...Georgia, regarding the translation of our Unique guides. Dr. Tkemaladze is a clinical geneticist, as well as the head of the Department of Molecular and Medical Genetics at Tbilisi State Medical University. Dr. Tkemaladze explained that...
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 >...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 >...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 >...leaflets, to holding a cake sale or doing some other fundraising, every little helps to raise awareness of rare chromosome and gene disorders. Join us! Click here for more details...
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 >...Shwetha Ramachandrappa and Consultant Genetic Counsellor Dr. Vishakha Tripathi, the aim is to cut through some of the more complex terms in an accessible, straightforward way. We think this ‘jargon buster’ from...
READ MORE >...new animation from Great Ormond Street Hospital and charity (GOSH). It will help you to discover what your genome is and how the technology behind whole genome sequencing (WGS) works....
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 >...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 >...practice in this area. I am looking for participants that are parents or carers of a young person with a genetic diagnosis and a learning disability aged 10-24 years. Participants...
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 >...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 >...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 >...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 >...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 >...take part in an interview (which can be conducted in English, German or French). Participants are eligible to take part whether they accepted or declined NIPT. For further information please...
READ MORE >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...
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 >...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 >...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...
READ MORE >...Ramachandrappa and Consultant Genetic Counsellor Dr. Vishakha Tripathi, the aim is to cut through some of the more complex terms in an accessible, straightforward way. We think this ‘jargon buster’...
READ MORE >...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 / Genomic terms helpful....
READ MORE >...mine who works as a paediatrician recommended getting in touch with Unique. As a doctor, she knew how valuable the accurate and compassionate information provided by Unique was to families....
READ MORE >...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:...
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 >...I will be studying an MSc in Genetic and Genomic Counselling at Cardiff University. I look forward to speaking to and meeting many more Unique families. Francesca Wicks BSc(Hons) francesca@rarechromo.org...
READ MORE >...this role, I am completing a Masters in Genomic Medicine at Imperial College London. I have worked as a carer in my local community in various positions, have completed a...
READ MORE >...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 Unique’s information guides......
READ MORE >Hi there…. I’m Unique’s Finance Officer, having joined in April 2017. My background is in Compensation and Benefits within Human Resources so I have always enjoyed working with numbers......
READ MORE >Hi, I am Anita and I am delighted to join the Unique team. Professionally I have worked as a Midwife for the last 26 years.......
READ MORE >Hello, I am Gemma. I work as an Administration Officer for Unique. My main job is to keep the database updated and I am currently engaged in a rolling programme...
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