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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 >Resources & information for professionals working with those affected by Rare Chromosome and Gene Disorders.......
READ MORE >Living with, or caring for a loved one with a rare chromosome or gene disorder can sometimes affect our emotional health. It is important to look after your mental health...
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 >...a challenge for all the family so decide what you’re going to do, set up a page at www.justgiving.com/unique – write about what you are doing and why and then...
READ MORE >Information & support for families & individuals affected by Rare Chromosome and Gene Disorders....
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 >...This happens when the variant occurred during fetal development rather than within an egg or sperm. Splice site variant this is a gene sequence variant that affects the way a...
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....
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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:...
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READ MORE >Become a Member Unique supports and informs families affected by rare chromosome and gene disorders and the professionals working with them. It’s free to join and become part of our supportive...
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 >...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 >...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 >...and reach out to those who might not have heard of us and need support and we’re celebrating all the unique children and adults and their amazing achievements. So many...
READ MORE >...08451 205 204 . Based in the UK Personalised children’s books https://kck.st/2QHrDAf The Treehouse at Number 9 books and a musical story App. https://treehousegenies.com/about-treehouse/ Toys TFH specialneedstoys.com/ukBased in the UK...
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 >...the added variable of stress, written information might be even harder to digest. I found the Unique site, downloaded the information guide and looked at the scope, found Claire Andersen’s...
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 >...and uncertain. Unique aims to relieve this isolation by providing information about the condition, about how a person might be affected and what they might expect in the future. Unique...
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 >...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 >...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 >...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 >...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 >...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 >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 >...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 >...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 >...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 >...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 >...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 >...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 >...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...
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