Gift ideas and useful websites

...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...

COVID-19 General Advice

...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...

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Data Protection & Privacy Policy

...reflect changes in the law or guidelines from appropriate regulators such as the Information Commissioner (www.ico.org.uk). Please check our website (www.rarechromo.org) regularly for details of any such changes. Any questions?...

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Professionals

Mental health & wellbeing

...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....

Unique's Funday Friday | 19th June 2020

...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...

Families

Awareness Day 2023

...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...

Where can I get help and support when the Unique team is not available?

...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:...

Cookie Policy

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...

Advertising Policy

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....

Equal Opportunities Policy

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...

Awareness Week

...social media Motivating Monday – a day to shout about your achievements or your child’s achievements – this really helps motivate others Telling Tuesday – a day to educate tell...

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The Be-Well Checklist: Helping parents, carers and professionals to change the behaviour and improve the wellbeing of people with severe learning disability and complex needs.

...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...

Covid-19 Vaccinations (UK Only)

...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/...

Rare Chromosome Disorder Awareness Day - Quiz for Professionals

...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...

New general advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders

...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...

Christmas......Sorted!

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...

Scaling the Heights...

...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...

Unique supporter Adam Astill on how we help families

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...

IMPaCCT study: Investigating the impact of COVID-19 on caregivers and patients

...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...

Gift Ideas and Useful Websites

...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...

Discussion groups to understand community attitudes to research on rare genetic disorders in British Pakistanis

...so, we would like your advice on how best to communicate our research and findings within the community.  Confidentiality: We are aware that this discussion will focus on sensitive topics....

IMAGINE ID: New Participants Urgently Needed

...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...

100,000 Genomes Project: Highlighting the Impact of Participant Data

...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...

KBG Syndrome Family Day (UK)

...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  ...

UK Rare Diseases Framework

...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...

New information guide on 22q11 deletion syndrome now available in Lithuanian thanks to international teamwork

...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...

New Webinar: Delivering Different/Difficult News

...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...

Update: Down Syndrome Bill

...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:...

News from Georgia

...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...

Unique's Christmas Colouring Competition!

...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:...

Invitation to participate in study about NIPT (Non-Invasive Prenatal Testing)

...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...

Join our Team: Unique are Recruiting!

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...

Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19

...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,...

Translating Unique's Chromosome Disorder Guides

...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...

Farewell Gill

...families, In September 2023, Peter and I celebrated the 33rd birthday of our firstborn child, Lucy (“Lulu”) – hard to believe – [see accompanying photo of Lulu last Christmas] and...

Unique over Christmas and the New Year

...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...

Volunteers Needed: Manchester/North West UK

...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...

Martina & Lucy

...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...