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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 >...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 >...(Registered Charity 1110661, Company Number 5460413) Please use the link above to view our online accounts for the financial year ending 31 March 2022. The report contains details on how...
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 >...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 >...www.unique-chromo-shop.myshopify.com/ Other ways to get involved could include: •Snap a photo of your child and share on all your social media accounts using #uniquenotalone #rarechromo #rarechromoday •Share a video telling...
READ MORE >...links to external commercial websites, junk mail, “spamming,” chain letters, or any other form of unauthorised solicitation; (4) contains software viruses or any other computer code or files that are...
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 >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 >If you have already joined Unique’s family membership, then you can access this family members-only area by completing all the details below. When entering your membership number, make sure to...
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 >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 >...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 >...the British Society for Genetic Medicine, the Clinical Genetics Society and Aimes (a healthcare IT company). The tool is based on advice from major specialist colleges in the UK and...
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 >...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 >...for parents and carers of medically complex children: https://www.wellchild.org.uk/2020/03/18/ten-ways-to-keep-my-child-withcomplex-health-needs-safe/. This includes a helpful link to a poster to put on your front door to advise visitors to your home of...
READ MORE >Joe Butt – Unique Volunteer Throughout my education, I’ve come across Unique many times. Studying genetics at university, I learnt about the many conditions that affect families across the world....
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 >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 >...by geneticists and, with her specialist software husband, Trevor, developed the Unique computerised database to store members’ lifelong records, making it possible to find and retrieve invaluable information and put...
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 >...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 >...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 >...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 >...we’re sharing in case other families would find them useful too. We’re not endorsing any of the products or companies included so please make sure you thoroughly check them out...
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 >...evolving and their approach to analysis. Click here to read a highlights blog and find a list of the Q&As. You can view a recording of the webinar here: https://vimeo.com/775813073/b6f9e19ccb...
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 >...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 >...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 >...your family for an in person visit at our Clinic. On these visits, we will interview you about your child and ask your child to do some puzzles, fun computerized...
READ MORE >...to their affected brother or sister Able to take part in an interview (online, phone or face-to-face) and provide consent for themselves Please pass on the information to anyone in...
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 >...contact for existing members and professionals. In responding to queries you will use information from our comprehensive database, as well as researching various published materials. Highly motivated and flexible, you...
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 >...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 >...done completely voluntarily and in their own time. We would like to say a great big thank you to everyone involved … Georgian families are very lucky to have such...
READ MORE >...your completed colouring competition and email it to Arti at arti@rarechromo.org Please remember to add your name & age on the colouring competitions DEADLINE: Monday 14th December 5pm (GMT) Categories:...
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 >...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 >...the final comments and sent the complete long and short version of the guide back to Claire…only to find out that Unique was sadly affected by the Covid-19 pandemic and...
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 >...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...
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