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...you make a donation via the Unique website at www.rarechromo.org we collect certain information to enable us to process the transaction. This information includes your name, address, email address, telephone...
READ MORE >...email our Family Support Officer, Marion Mitchell at marion@rarechromo.org. NEW for 2022: Health and Wellbeing Information Guide Click here to read and download our brand new guide to Mental Health and...
READ MORE >...to caroline@rarechromo.org and she’ll tell you how to pay the entry fee or affix £1 to a paper copy and post it to Caroline Pocock, Unique, The Stables, Station Road...
READ MORE >...we’ll send them out to you. If you’re outside the UK, please email craig@rarechromo.org for costs including shipping. Dream pad integratedlistening.com/products/dreampad/Dreampad™ and Dreampad Mini™ The Dreampad™ and Dreampad Mini™delivers music...
READ MORE >...Health and Wellbeing Information Guide Click here to read and download our brand new guide to Mental Health and Wellbeing for parents, adults and children affected by and living with...
READ MORE >...Clinical Genetics Society and the Association for Genetic Nurses and Counsellors. Covid-Rare-Disease-info-sheet-1-Overview-1Download Covid-Rare-disease-info-sheet-2-What-makes-a-person-more-vulnerable-1Download Covid-Rare-disease-info-sheet-3-Understanding-your-own-risk-from-Covid19-1Download Covid-Rare-disease-info-sheet-4-What-to-do-if-you-are-extremely-vulnerable-3Download Covid-Rare-disease-info-sheet-5-What-to-do-if-you-have-symptoms-1Download Covid-Rare-disease-info-sheet-6-I-am-worried-about-letting-carers-into-my-home-1Download Now, read on for some general advice regarding Coronavirus (COVID-19) for patients with...
READ MORE >...be a huge success….. Big Blue Bake Sale Kit and Poster https://www.rarechromo.org/files/Bakesalekit.pdf To download details about the Baking Kit, plus a poster to use for your bake sale, just click...
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 >...complete awareness week. We know many of you had been planning fun & exciting ways to raise funds and awareness for Unique and rare chromosome & gene disorders, and we...
READ MORE >...future, via email, post or phone: E-mail: membership@rarechromo.org Tel: +44 (0) 1883 723356 Post: Sarah Wynn PhD, Unique Chief Executive Officer, The Stables, Station Road West, Oxted, Surrey, RH8 9EE, UK...
READ MORE >Keeping you informed To read and download any of our practical guides for families, including our brand new Self-Isolation Resources Guide, click View below. If you would like to see...
READ MORE >...Craig Mitchell Chief Operating Officer Unique The Stables, Station Road West, Oxted, Surrey, RH8 9EE, UK Email: Craig@rarechromo.org Last edited by Beverly Searle BSc(Hons) PhD CBiol MRSB 5th January 2018...
READ MORE >...work, or work more efficiently, as well as to provide information to the owners of the site. Below we list the Cookies used on this website and why we use...
READ MORE >...your or your child’s condition is not listed please contact us directly (help@rarechromo.org) to check if we have any members registered with that condition. We are a very small team...
READ MORE >...secret, copyright, or other proprietary rights of any party; (3) constitutes advertising in any form, including, but not limited to, advertising of products or services for personal or commercial gain,...
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 >...ensure all aspects of it are adhered to at all times throughout the organisation. The Chief Executive Officer will ensure it is disseminated to all new staff as part of...
READ MORE >...please email us at volunteer@rarechromo.org We will ask you to complete a short form and, if appropriate, offer a short, informal interview to ensure we meet each other’s expectations, answer...
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 >...small prize. 5 runner-ups will have their colouring competitions pictures posted on Unique’s website and social media pages. Any questions? Email Arti at arti@rarechromo.org Happy Colouring! Unique’s-Christmas-Colouring-Competition (JPEG)Download Unique’s-Christmas-Colouring-Competition (PDF)Download...
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 >...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 >...determined, so strong, and nothing fazes her. We have been supported by Unique from around 20 weeks old. We would not be here today without Unique. Unique have introduced us...
READ MORE >...mental health problem, you are not alone in feeling the way you do. Check out our wellbeing support page at https://rarechromo.org/wellbeing/ and also our crisis and support page at https://rarechromo.org/crisis-support/...
READ MORE >The more eagle-eyed among you will have seen actor Adam Astill in shows like Eastenders and Holby City (and as Mr Hammond in Andy’s Safari Adventures – one for the...
READ MORE >NHS England Genomic Medicine Service supported Unique’s Rare Chromosome & Gene Disorder Awareness Day in June 2022 by sharing information and family stories; highlighting the role genomics and the National...
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 >...of the issues faced by Unique families, particularly in the early days. Please click here to read more about Anita. If you would like to contact her, please email anita@rarechromo.org ...
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 >...having a child with a rare genetic disorder. How will this help? We hope that the research we are proposing will enable families to receive more accurate advice about their...
READ MORE >...Lallyette, there was only one winner….. Unique! The team are preparing for 20 different fundraising challenges to celebrate their 20 years. Click here to read more about what they have...
READ MORE >...in the UK. Within minutes ERN-ITHACA and ESHG-Y had discussed with Dr Marcinkutė and she had kindly offered to volunteer her time to help proofread, amend and format an AI-assisted...
READ MORE >...Georgia, regarding the translation of our Unique guides. Dr. Tkemaladze is a clinical geneticist, as well as the head of the Department of Molecular and Medical Genetics at Tbilisi State Medical University. Dr. Tkemaladze explained that...
READ MORE >...and for more about Unique and #Rarechromoday 2022, please visit https://rarechromo.org/rarechromoday/ We are grateful to actor Adam Astill for narrating the animation and to the Dewan Foundation (via Joe Nicholson)...
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 >...conditions to: Shape the research, services, and support available to people living with rare conditions. Provide strategic advice to the Manchester Rare Conditions Centre and the Manchester Biomedical Research Centre....
READ MORE >...Helen Lallyette had been helped by Unique and she wanted us to benefit from their fundraising. It was an extra special year as Paydata celebrated their 20th anniversary. Click here...
READ MORE >...Medicine, the Clinical Genetics Society and the Association for Genetic Nurses and Counsellors. Covid-Rare-Disease-info-sheet-1-OverviewDownload Covid-Rare-disease-info-sheet-2-What-makes-a-person-more-vulnerableDownload Covid-Rare-disease-info-sheet-3-Understanding-your-own-risk-from-Covid19Download Covid-Rare-disease-info-sheet-4-What-to-do-if-you-are-extremely-vulnerableDownload Covid-Rare-disease-info-sheet-5-What-to-do-if-you-have-symptomsDownload Covid-Rare-disease-info-sheet-6-I-am-worried-about-letting-carers-into-my-homeDownload 24th March 2020 General advice regarding Coronavirus (COVID-19) for patients with...
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 >PHOTO CREDIT: HANS ODEBERG We’re pleased to have our first chromosome disorder information guide available in Swedish. Thanks to Kristina Runyeon-Odeberg for help with the translation. Read her story below...
READ MORE >...or would like help interpreting your/your child’s genetic report, please get in touch with Unique (help@rarechromo.org) or contact your local Genetics service. You may also find Unique’s Glossary of Genetic...
READ MORE >...predicted that, despite every effort, our daughter would be ‘unlikely to walk and talk’ and we should enjoy her ‘as she is’. In the context of her survival, this seemed...
READ MORE >...many families and I had the pleasure of attending several family days. I am very passionate about supporting people and empowering them with information. I have a varied professional background...
READ MORE >...have any questions or would like to join or know more about Unique: sarah@rarechomo.org. Sarah Wynn PhD is the editor of the Unique website. This is an explanation of her...
READ MORE >...for such a good purpose! If you would like to make a donation or have any finance queries, please don’t hesitate to get in touch! My email address is louise@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 >...life-limiting conditions and am passionate about supporting them and their families. I look forward to speaking with many of you in the coming weeks and months. Charlotte Wilmshurst BSc(Hons) charlotte@rarechromo.org...
READ MORE >I’m Unique’s Chief Operating Officer and work on fundraising, administration and infrastructure, basically anything to support the frontline staff as they deliver services to families and professionals. My background is...
READ MORE >...gives me with Unique’s members and I can’t emphasise enough how valuable the information and personal experiences you share with us are. Thank you! Claire Andersen BSc (Hons) PhD claire@rarechromo.org...
READ MORE >...my midwifery career, I was working in a department which offered screening and counselling for expectant mums, when an abnormality had been detected in a pregnancy. This is where I...
READ MORE >Hello, I am Gemma. I work as an Administration Officer for Unique. My main job is to keep the database updated and I am currently engaged in a rolling programme...
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