- Видео 12
- Просмотров 46 266
Unique - Rare Chromosome Disorder Support Group
Добавлен 15 июл 2020
Unique is an international charity that supports, informs and networks with anyone affected by a rare chromosome disorder or single gene disorder. Many are born with learning and physical disabilities and medical issues. We work to help their families understand and come to terms with their diagnosis, improve their care and life chances and to raise public awareness.
Unique interview with Michelle Novelli for Rarechromoday 2024
Unique CEO Sarah Wynn interviews Michelle Novelli. Michelle is the wife of Chef and Restaurateur Jean-Christophe Novelli and talks about their son's rare chromosome disorder. Michelle and Jean-Christophe want to shout out to all the other parents out there who are doing a great job against all odds and acknowledge the help and support they received from Unique.
Просмотров: 363
Видео
Touch The Sky, by Unique
Просмотров 3,8 тыс.4 месяца назад
The official lyrics video for Touch the Sky, by Unique. We are Unique, a charity committed to growing a connected community that works to provide understanding and guidance for all those affected by rare chromosome and gene disorders through the collective advancement of knowledge, shared experience, education and partnerships. Both the song and video have been created to be as accessible as p...
Unique Presentation 2024 with recorded script
Просмотров 2824 месяца назад
Presentation, narrated by actor Adam Astill, about how the charity Unique helps those living with rare chromosome and gene disorders. Can be used to educate friends, family and work colleagues about what it's like to live with a rare chromosome disorder and how Unique's support and information can be so valuable.
The role of a Genetic Counsellor explained
Просмотров 31610 месяцев назад
Ever wondered what a Genetic Counsellor does, how they can help you or why you or your family might be offered genetic counselling? This new video from Unique, working with Genetic Counsellor Niamh Marshall, explains....
What is DNA Sequencing?
Просмотров 8 тыс.Год назад
An animated video from Unique - the Rare Chromosome Disorder Support Group, explaining what DNA Sequencing is in easy to understand language and pictures. #genomesequencing #genomics #genetics #dna #chromosome #gene #RareDisease #dnasequencing
Actor Adam Astill talks about Unique's work with those living with rare chromosome & gene disorders
Просмотров 982Год назад
Actor Adam Astill (Eastenders, Holby City and Mr Hammond in Andy's Safari Adventures is a great supporter of Unique and recently took time out to record a short video message about the work we do to help families living with rare chromosome & gene disorders. Transcript: Hello I'm Adam Astill and I'm a big supporter of Unique and I'm in complete awe of what they do. Now, through friends who are ...
Unique Information Event 29th November 2020: Chris Oliver Behaviour Talk
Просмотров 1762 года назад
Professor Chris Oliver presents the Be-well Checklist for behaviour and wellbeing of children and adults with severe intellectual disability and complex needs that can be used by carers and professionals.
Angela and Rowan
Просмотров 1132 года назад
Unique member families share their stories of living with rare chromosome disorders, as part of #RareChromo Disorder Awareness Day. Watch Angela’s and Rowan’s story here to see how Unique continues to support families in their journey #UniqueNotAlone www.rarechromo.org
What is an Array CGH?
Просмотров 32 тыс.2 года назад
A short animation explaining what an array CGH test is.
Hi there, I want to go into genetic counselling, would you advise me to do the 1 year Msc in genomic medicine and then apply for roles , or go the STP route? And do I need experience in genetics? My BSc is Biomedicine Science and I've got experience in care. Will this be okay? Thanks.
Thank you for sharing your story Michelle - Valentino sounds like a wonderful spirited young boy and you and Jean-Christophe are doing an amazing job as parents! My daughter, Molly, was born with a rare chromosome disorder in 2004, (7q36.1-36.3), I remember the early days very clearly. It felt so lonely and isolating but like you, I learnt to navigate the system of health and disability and became a strong advocate for the disability community and for our child's needs. Our daughter is also autistic and has ADHD and behavourial challenges but has amazed us with her progress over the years, it has always been slow but she continues to learn. It's true that our kids show us a way to look at the world we would never otherwise have discovered. Best wishes to you and your family!
Great job! Love the agility and swimming like a fish super-power of Valentino... We're 25 years further on and recognise the description of no-filters directness, dancing ("shimmying" in the case of our daughter, sometimes to external music and sometimes to her internal rhythms!), behaviour that makes perfect sense to her and often very little to the rest of us until we catch up, total honesty... what you see is what you get. Somehow we have arrived in "the future". The path was indescribable and yet organic, small steps and almost imperceptible changes, management of challenges all the way with help from many people. The future seems to be what you make it. Statutory and other services may encourage but cannot solve issues or provide answers. It might be useful to have a place where Unique adults and their companions/carers provide information on actual lifestyles
geart analogy helped a lot👍
Ifnormative
We NEED more drs in America.. as a 35yr old disabled Mom& 2 kids with 43 duplicated genes... ontop of it... I have crtap7 rare... never stop advocating!
I love Unique, I wish they had a branch in the USA, my daughter is registered with unique she was born with 8p23.1 duplication syndrome and there's nothing in the USA that I know that's anything like unique
Thank you for this @Adam. And THANK YOU foro your work @Unique !