EXISTING MEMBER LOGIN
Forgot password? Please contact us membership@rarechromo.org
Registered member but first time log in? Just go to the Unique Members Area Registration Form
Not yet a registered member? Just go to the Become A Member page
...Clinical Genetics Society and the Association for Genetic Nurses and Counsellors. Covid-Rare-Disease-info-sheet-1-Overview-1Download Covid-Rare-disease-info-sheet-2-What-makes-a-person-more-vulnerable-1Download Covid-Rare-disease-info-sheet-3-Understanding-your-own-risk-from-Covid19-1Download Covid-Rare-disease-info-sheet-4-What-to-do-if-you-are-extremely-vulnerable-3Download Covid-Rare-disease-info-sheet-5-What-to-do-if-you-have-symptoms-1Download Covid-Rare-disease-info-sheet-6-I-am-worried-about-letting-carers-into-my-home-1Download Now, read on for some general advice regarding Coronavirus (COVID-19) for patients with...
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 >...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 >...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 >...and helps others to realise they are not alone. Why not use this opportunity to post something on social media to help raise awareness? Need some help with Facebook, Instagram...
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 >...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 >...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 >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 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 >...help us improve this site. The cookies collect information in anonymous form, including the number of visitors to the site, where visitors have come to the site from and the...
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 >You can download copies of Unique annual reports and accounts by clicking on one of the links below: Unique Annual Report and Accounts 2023 (Registered Charity 1110661, Company Number 5460413)...
READ MORE >Keeping you informed To read and download any of our practical guides for families, including our brand new Self-Isolation Resources Guide, click View below. If you would like to see...
READ MORE >...Site is held by Unique. You may download or print copies of the reports or information contained within this Site for your own private or professional non-commercial use only, provided...
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 >...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 >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 >...the Trisomy 9 Support Group. In 1993 the group was granted Charity Status and the logo Unique was adopted. In 1996, Unique launched its comprehensive computerised database to collect information...
READ MORE >Accessibility Options We at Unique are committed to offering a website that is accessible to the widest audience possible, regardless of the technology available to them or their own ability....
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 >...be there to help all Unique families, plus the ever-growing number of families who will need us over the coming year. If you can, please support our year-end appeal so...
READ MORE >...Medicine, the Clinical Genetics Society and the Association for Genetic Nurses and Counsellors. Covid-Rare-Disease-info-sheet-1-OverviewDownload Covid-Rare-disease-info-sheet-2-What-makes-a-person-more-vulnerableDownload Covid-Rare-disease-info-sheet-3-Understanding-your-own-risk-from-Covid19Download Covid-Rare-disease-info-sheet-4-What-to-do-if-you-are-extremely-vulnerableDownload Covid-Rare-disease-info-sheet-5-What-to-do-if-you-have-symptomsDownload Covid-Rare-disease-info-sheet-6-I-am-worried-about-letting-carers-into-my-homeDownload 24th March 2020 General advice regarding Coronavirus (COVID-19) for patients with...
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 >Unique families…. Genomics England would like your help in developing its Newborn Genomes Programme, and in particular, invite you to some workshops to inform the drafting of principles that will...
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 >...was helpful in deciding what to do when thinking about having more children. The PREGCARE team want to talk to people in the Unique community to help them plan what...
READ MORE >...conditions known to be associated with neurodevelopmental problems, such as Intellectual Disability, ADHD and Autism. But…. they need your help! They would like to speak to parents who have a...
READ MORE >...you affected by (or look after someone who has) a blood or immune disorder, a genetic eye condition, or an inherited neurodevelopmental condition? A team of researchers need your help....
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 >...others that you and your family are shielding during the Covid-19 pandemic. Unique Shielding Poster – EnglishDownload Unique Shielding Poster-Spanish Translation Download Unique Shielding Poster-French TranslationDownload Unique Shielding Poster-German TranslationDownload...
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 >...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 >...in a crisis situation, please see our ‘crisis support’ information for further sources of help. Crisis Support InformationDownload Whilst this year’s festive celebrations may be very different to our usual...
READ MORE >...by participating you will help us understand the support needs of families affected by developmental disorders which in turn may help the genetics department address these and direct their services...
READ MORE >...disorders. Please click here to go to our selection of practical family guides where you can download this and other guides for free. Unique Practical Guide to help Young Carers...
READ MORE >...ill. Claire was very helpful in finding two other experts who would help, but the latter half of the information guide still remained. In the spring of 2020, I got...
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 >...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 >...CGH and how does it help? For Rare Chromosome and Gene Disorder Awareness Day 2022, we’re launching the first in a series of animations to help families better understand key...
READ MORE >...this research will help update our Unique guide ‘Supporting Siblings of Children with a Rare Chromosome Disorder’. Can you or a family member help? To take part in the research,...
READ MORE >...genetic disorders within the British Pakistani community may help provide British Pakistani couples with better information about their chances of having a child with a rare genetic disorder. Are you...
READ MORE >At Unique, we know only too well how gathering information from families can help to improve our understanding of rare chromosome and gene disorders. We recently shared details of a...
READ MORE >...conversation. The findings of the study are now available to read. Please click the download button below to read more.Download With thanks to primary researcher, Dr Alexander Wilson and principal...
READ MORE >...get involved please take a look at the following documents. 9p-minus-research-project-descriptionDownload 9p-minus-research-project-FAQDownload 9p Minus Research Project Information Webinar Please note that participation in this study is for US families only....
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 >...our frontline team, you will help provide support and information to families living with RCDs, cover for the CEO as the first contact point for new families and be a...
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 >...will last approximately 40 minutes. Any information given will be anonymised and any identifiable information will be kept confidential. By participating you will help us understand the support needs of...
READ MORE >...With so little currently known and understood about complete trisomy 5p, the data in a natural history study can provide a very helpful resource to physicians that can potentially help...
READ MORE >Have you ever wondered what a genetic counsellor does, how they might be able to help you or why you or your family might be offered genetic counselling? This brand...
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 >...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 >...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 >...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 >...to parents of children having genome sequencing in the NHS Hello! My name is Bettina.… I am looking for 5 parent volunteers to help me with the development of 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 >...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 >...also mum to a young person with Down’s Syndrome. She wants to use her personal experiences and find out more about how a genetic diagnosis is communicated within families who...
READ MORE >...useful for and relevant to lots of different chromosome and gene disorders. Please click here to read and download it for free (click on Chromosome Disorder Guides – English and...
READ MORE >Just published and available free of charge, Information Guides to: 8p inverted duplication and deletion – click here to read and download 15q11.2 microduplications – click here Further Education, Training...
READ MORE >...that families receive the best care and support possible. All answers and comments are confidential and will be stored securely and anonymously. Results from this survey will be used as...
READ MORE >...Participants are eligible to take part whether they accepted or declined NIPT. For further information please contact the researchers: Ruth Horn (ruth.horn@ethox.ox.ac.uk) or Adeline Perrot (adeline.perrot@ethox.ox.ac.uk) Or go to www.ethox.ox.ac.uk/Our-research/research-projects/nipt...
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 >...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 >...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 >...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 >...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 >...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 >...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 >...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 >...return they will give you £100 for your time and energy. What happens after the participation? Genomics England will be running completely optional follow-up sessions, for which they will offer...
READ MORE >...‘GDPR’ comes into force. If you’re a member of Unique, we already have your consent to store and process the personal information you gave us when you joined. The new...
READ MORE >...we’re also now looking for new families who would like to take part. The study will help us to explore how genetic changes affect children and young people’s behaviour and...
READ MORE >...help families better understand key parts of genomics. Produced by the Unique team, working with Manta Ray Media, film producer Adam Brichto, artist and animator Aimée McLernon, Consultant Clinical Geneticist and Unique Trustee Dr....
READ MORE >Unique are seeking a new, part-time Information Officer (Family Support). You will help provide support and information to families living with Rare Chromosome and Gene disorders, act as a first...
READ MORE >Unique provides various services such as our helpline, numerous information guides and a magazine and we hold regular regional family social events. We also maintain various social media resources like...
READ MORE >Click on the arrow below to play a video which is a great new animation from Great Ormond Street Hospital and charity (GOSH). It will help you to discover what...
READ MORE >...2018 we’ve welcomed and helped over 2,000 new families affected by rare chromosome and gene disorders – a record number. It’s a huge 40% increase. We provide a helpline, tailored...
READ MORE >...was genetic. I clearly remember the confusion we felt and unfortunately, because of the rarity of her condition, the medical staff were not able to help us understand what this...
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 >...know that when I recommend Unique to families they will be met with warmth, compassion, specialist knowledge and practical advice. Attending Unique events, listening to members of the Unique community speak...
READ MORE >...rare chromosome and single gene disorders and help match families on the basis of their rare chromosome disorder, symptoms or treatments. I worked closely with Unique during my previous role...
READ MORE >...a Masters degree in Genetic and Genomic Counselling so that I will be better equipped to help all support all our Unique families. Please do get in touch if you...
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 >...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 >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 >...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 >...CGH’ test, or an ‘array’ for short, but what is an array CGH and how does it help? Watch this animation by clicking the link above to find out. ...
READ MORE >