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
...website, how long you were on the site, your Internet domain name and the internet browser you use. This information helps us to improve our website service. We make use...
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 >...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 >...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 >...rhythm and melody, simplified lyrics, sign language and captions. We hope to continue growing our connected community and would appreciate it you could share it with friends, family, and loved...
READ MORE >This Web Site Copyright © Unique – The Rare Chromosome Disorder Support Group 2020 Although great care has been taken to ensure the accuracy of the information in this website,...
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 >...chromosome. Recurrent (deletion/duplication) is a chromosome change that can happen in the same/similar region of a chromosome in a number of different unrelated people. This happens because there are regions...
READ MORE >...Unique generally does not pre-screen or edit the Content posted by participants in chat rooms, message boards, or other interactive areas on Unique‘s website(s). However, Unique and its agents have...
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 >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 >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 >We're sorry, your donation failed to process. Please try again or contact site support.
READ MORE >...the above documents please contact:To view the above links you may need Adobe Acrobat Reader. This is available as a free download from the Adobe web site if you haven’t...
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 >...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 >...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 >...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 >...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 >...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 >...Swedish guide in its long and short versions, and I hope more will follow! Best wishes, Kristina Photo credit: HANS ODEBERG See our chromosome and gene disorder guides at https://www.rarechromo.org/disorder-guides/...
READ MORE >...will also network across the world linking families who have similar issues or diagnoses. You may have seen or heard in the news about new exciting genetic tests like genome...
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 >...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 >...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 >...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 >...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 >...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 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 >...take part, please email imagineID@cardiff.ac.uk for more information, or contact one of our researchers on the numbers below: Lauren: 02920 688065 Poppy: 02922 512286 Hannah: 02920 688316 More info: https://imagine-id.org/news/video/...
READ MORE >...so I can provide the best information and support I can to the families I see, including knowing where they can go for ongoing support following a diagnosis. I was...
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 >...guides is an achievement, not to mention the invaluable support for families they provide and the events that are organised by the team. They suggested that my skills were best...
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 >...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 >...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 >...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 >...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 >...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 >...the world 🌍 To enter: Please donate a minimum of £1 at www.rarechromo.org/donate with the reason for donation as ‘Christmas Colouring Competition’ Take a photo or scan a copy of...
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 >...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 >...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 >...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 let them know about our work. Click to play it below or share the link on your social media, on Whatsapp or by email. The link is: https://youtu.be/Rw-1bVBMHSY https://www.youtube.com/watch?v=Rw-1bVBMHSY...
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 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 >