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...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 >...your GP as long as you are registered with a GP at: www.nhs.uk/service-search/find-a-psychological-therapies-service These services offer therapies, such as cognitive behavioural therapy (CBT), for common problems including stress and anxiety....
READ MORE >Unique GLOSSARY of genetic / genomic terms General Acrocentric a chromosome whose centromere is close to the end of the p-arm (chromosomes 13, 14, 15, 21 and 22). Allele different...
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 >...small presents provided by your work colleagues. Sponsored silence: This one might not be so easy for some! Get sponsored to stay silent for a long period of time for charity....
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 >...the USA. https://justlikeyoudolls.com/dolls with cochlear implants, etc US based Online shops for switch adapted toys Inclusive Technology inclusive.co.uk/hardware/switch-adapted-toys Liberator liberator.co.uk/products/learning-and-inclusion-aids/switch-adapted-toys Other items/useful websites Living made easy livingmadeeasy.org.uk/children/play-%26-leisure-31470845 1309177 The play...
READ MORE >Unique has been supporting, informing and networking families and individuals affected by a rare chromosome disorder since it was founded by Edna Knight MBE in the UK in 1984 as...
READ MORE >...come across anyone with the same disorders. The usual sources of support are not available to affected families, yet the effects of the disorders can be devastating. The vast majority...
READ MORE >...great supporter of our work and remains an active member of Unique. Her tremendous contribution to the charity over such a long period will be invaluable well into the future....
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 >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 >...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 >...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 >...the presentation: Findings from high quality research studies in genetic syndromes www.findresources.co.uk Cerebra’s Pain guide for parents www.cerebra.org.uk/download/pain-a-guide-for-parents/ Research papers (freely available research papers – search by name) www.researchgate.net...
READ MORE >...did not take me long to realize I could focus on the area of medical terminology and how terms differ between English and Swedish. I also added readability after a...
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 >...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 >...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 >...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 >Study title: Dissecting the effects of genomic variants on neurobehavioral dimensions in CNVs enriched for neuropsychiatric disorders (DiGEN) About the study We are a research team based across Cardiff University...
READ MORE >...or whenever. Now for just 10 pounds, a family can get an understanding listening ear, information and a network of families who understand the journey they’re on. Your help is...
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 >...download and focus on more generic topics which are relevant to families caring for a child or adult with a rare chromosome or gene disorder. Topics covered include A guide...
READ MORE >...email Grainne Colligan on grainnec@safh.org.uk, Dr Saghira Malik Sharif on saghiram.sharif@nhs.net or Dr Shwetha Ramachandrappa on Shwetha.Ramachandrappa@gstt.nhs.uk. Your contribution will shape the research we do and how we communicate it....
READ MORE >...a diagnosed genetic condition with intellectual disability, learning difficulties or developmental delay. To find out more information please visit IMAGINE ID or contact the team on imagine.id@nhs.net or 01223 254631...
READ MORE >...research study looking at the effects of these disorders on behaviour and mental health. Below is a flyer from the research team with more details of their research project for...
READ MORE >...22q11.2 deletion or 1q21.1 deletion. You live in the UK (including Northern Ireland). Siblings are also eligible to take part as long as they are also aged 10-25. Siblings do...
READ MORE >...or 22q13 (SHANK3) deletion. Siblings are also eligible to take part as long as they are also aged 6-25, regardless of whether they also have a diagnosed genetic condition. How...
READ MORE >...genetics, my respect for the charity and the team, as well as my interest in helping support families, I plan to continue volunteering for as long as they want me!...
READ MORE >...for an in-person clinic visit. If you require overnight accommodation this will be paid for, and fuel and meal costs reimbursed. Siblings are also eligible to take part as long...
READ MORE >...preparation for the new law, we have made some changes to our Privacy Policy, which explains things like what information we collect, why we collect it, how long we will...
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 >...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 >...will have an excellent understanding of human genetics and genomics and medical terminology. Good IT and excellent communication skills are essential. Experience of counselling families with genetic/genomic disorders is highly...
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 >...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 >...beginning these conferences were fantastic, a chance to hear from leading healthcare professionals in pre-internet times but, more importantly, to spend a relaxed weekend socialising with other families and meeting...
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...
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 >...scientific literature and related databases but with information gathered from families who can give a more personal insight as to the effects of such changes. Anna Pelling BSc(Hons) PhD anna.pelling@rarechromo.org...
READ MORE >...meant for India and her future. That was when my wife found out about Unique after one of many long nights searching the internet. The help Bev and the team...
READ MORE >...adulthood, Stephen has become a reticent but kind and caring man. Socially he is completely relaxed within the family and with family friends he has known for a long time....
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