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...www.ico.org.uk Professionals We collect information from clinicians and other professionals such as social workers and researchers in order to register you as professional members, because you have contacted us or...
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 >...or Bake Sale At work, school or at home, a cake sale always goes down well…after all, who doesn’t love a yummy cake? Unique’s bake sale kit makes it easy...
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 >...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 >...in the UK. To order yours, go to rarechromo.org/html/DonateWP.aspselect Buying Merchandise and tell us in the box how many bags you would like to order. Then complete your payment and...
READ MORE >...Kit Cake sales have always been a big hit with people fundraising and our Baking Kit is sure to help yours be a huge success….. Big Blue Bake Sale Kit...
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 >...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 >...to the bottom of the ‘Chromosome Disorder Guides – English’ table to view guides and reports on a wide range of related general topics like DNA sequencing, deletions and microdeletions,...
READ MORE >...can get involved. Some of the things other people do include: Organising a coffee morning, Holding a cake sale, Having a dress-down day at work or school, Holding a music or comedy gig, Doing a...
READ MORE >...on the chromosome arm (the resolution of bands depends on the chromosome preparation and staining technique used). Chromosome disorder a change to the sequence and/or structure of a chromosome that...
READ MORE >...a new topic added to this range of guides, please let us know by emailing info@rarechromo.org with your ideas. To support our work in this area to help us produce...
READ MORE >Use of Cookies by Unique Cookies are small text files that are placed on your computer by websites that you visit. They are widely used in order to make websites...
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 >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 >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 >...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 >In addition to our Information Guides to specific rare chromosome and gene disorders, we now have a range of free to download practical guides for families. These are free to...
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 >...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 >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 >...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 >IMAGINE ID is collecting information about children and young adults with a genetic diagnosis related to learning disabilities. The study hopes to recruit 5,000 families worldwide and wants to answer...
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 >...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 >...a small price to pay. Although the prediction was accurate, nothing could have prepared us for the journey ahead however, at the same consultation, the genetics counsellor not only “lent”...
READ MORE >Buy your Christmas cards from Unique and you’ll be directly helping those with rare chromosome and gene disorders. We have brand new, colourful and very festive designs this year, something...
READ MORE >...journey of families being diagnosed with a rare chromosome disorder. She got to meet all the UK based members of the team and see behind the scenes of what we...
READ MORE >It’s been another very busy year for Unique – welcoming and helping more families than ever before, providing information and support about a wide range or rare chromosome and gene...
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 >...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 >...you thoroughly check them out (including making sure the products are safe) before you buy anything or take any of the advice given. Click Here to go to the list...
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 >...that our member families face. In the first three months of 2019, we have been very busy representing Unique and our member families at a wide variety of workshops, conferences...
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 >...Amazon at the following links: sSMCs: https://cs-tl.de/DB/CA/sSMC/0-Start.html UPD: https://cs-tl.de/DB/CA/UPD/0-Start.html Please note, these are not publications written by Unique and we will not benefit from the proceeds of the sale of either...
READ MORE >...& Health Science Books @ Amazon.com Please note, this is not a publication written by Unique and Unique will not benefit from the proceeds of the sale of this book....
READ MORE >...new video from Unique is for you…. Someone might have genetic counselling for a range of different reasons. Genetic Counsellor and Unique volunteer Niamh Marshall has produced this short video...
READ MORE >Covid-19 impact on wellbeing of families of children with rare neurogenetic disorder The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the...
READ MORE >https://youtu.be/s7WWd7zsCdU In order to obtain a diagnosis of a rare chromosome disorder, many will have undergone an ‘array CGH’ test, or an ‘array’ for short, but what is an array...
READ MORE >Researchers at the University of Oxford are exploring the difficulties some children can have in understanding conversation. In order to learn more about these communication problems, they are inviting families...
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 >Study title: The impact of copy number variants on cortical network dynamics About our study We are a research team based in Cardiff University and we are interested in the...
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 >...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 >...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 >...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 >...very rare chromosome disorder currently effecting just under 600 people worldwide. KBG syndrome causes learning and developmental delays and disabilities. For me it means I have autism, ADHD, sensory processing...
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 >...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 >...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 >...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 >...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 >For Awareness Day 2024 (#rarechromoday) on June 13th, we’ve released a brand new presentation. Going through who we are, what a rare chromosome disorder is and what we do to...
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 >...what are the priorities for people with rare conditions. The Manchester Rare Conditions Centre and Manchester Biomedical Research Centre are working to improve the future diagnosis, treatment and research of...
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 >What is an Array CGH In order to obtain a diagnosis of a rare chromosome disorder, many will have undergone an ‘array CGH’ test, or an ‘array’ for short, but...
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