Understanding Rare Chromosome and Gene Disorders

Who We Are

Unique is a registered charity (registration no. 1110661). Our mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability/developmental delay and to raise public awareness. Wherever you are in the world, you are not alone in this journey!


Our Aims

In line with our Mission Statement above, we aim to act as an international group, supporting, informing and networking with anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder and with any interested professionals.


We aim to provide specialist information relating to many hundreds of different rare chromosome disorders and autosomal single gene disorders, to inform parents, carers and the professionals working with them.


We aim to facilitate a network of families across the world living with rare chromosome disorders or autosomal dominant single gene disorders , bringing them together both in person and virtually for invaluable mutual support. By networking with professionals and the wider public we also aim to increase awareness and understanding of what it’s like to live with these disorders.


We aim to be there for families and individuals, offering a listening ear, an understanding, sympathetic presence to support them when they need us most, often at or just after receiving a diagnosis of a rare chromosome disorder or an autosomal dominant single gene disorder.

Scroll down to meet the Unique team and if you would like to read more about Unique’s background and history please click here.

Meet the Staff

Sarah Wynn
Chief Executive Officer
+44 (0) 1883 723356

Hi, I'm Sarah. I'm really pleased to have recently taken on the role of Interim CEO of Unique, following Beverly's well-earned retirement after many years of dedicated service.

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Craig Mitchell
Chief Operating Officer
+44 (0) 1883 723306

I'm Unique's COO and work on fundraising, administration and infrastructure, basically anything to support the frontline staff as they deliver services to families and professionals...

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Anita Davis
Information Officer - Family Support

Hi, I am Anita and I am delighted to join the Unique team. Professionally I have worked as a Midwife for the last 26 years....

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Anna Pelling
Scientific Communications Officer

I was very happy to have been given the opportunity to join Unique in 2015 as one of the Information Officers. I am responsible for researching and writing or updating Unique’s information guides...

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Charlotte Wilmshurst
Information Officer - Family Support (Maternity Cover)

Hello, I’m Charlotte and I’m the newest member of the team, having joined in February 2024 as an Information Officer (maternity cover).

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Claire Andersen
Scientific Communications Officer

I first discovered Unique four years ago when my sister’s gorgeous youngest daughter Tilly was diagnosed with Tetrasomy 9p. While very little information was made available to her upon diagnosis, fortunately a friend of mine who works as a paediatrician recommended getting in touch with Unique...

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Francesca Wicks
Information Officer (Family Support)

I was thrilled to join the Unique team as a part-time Information Officer in August 2019. My role is to answer queries from families and professionals, provide information about specific rare chromosome and single gene disorders....

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Gemma Mitchell
Administration Officer

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 sending out database entry forms and consent forms to our member families. 

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Louise Jeffree
Finance Officer

Hi there…. I’m Unique’s Finance Officer, having joined in April 2017. My background is in Compensation and Benefits within Human Resources so I have always enjoyed working with numbers...

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Meet the Trustees

Sophie Sainty
Chair of Trustees

I'm Sophie and I have 21 year old son Max with dup 9p(23-14) and del 9p(23.1-23.3) and a younger daughter. Unique changed our lives when we were told shortly after his birth of his diagnosis but also that they couldn’t tell us any more about how he would develop...

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Helen Campbell

Hi , I’m Helen. My younger son Patrick had a profound speech and communication delay which lead him be tested at the age of 4 years in 2009. This found that he has a deletion 18p11.32p11.21......

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Isobel Hindle

Following completion of my English degree at Durham University, I took a teachers’ training diploma. During the course of that training I had many weeks of student teaching experience some of which was spent in a ‘special needs’ school (as it was then called)...

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Edna Knight MBE
Founder, Life President, Trustee

I am Edna Knight, Unique’s Life President and a Trustee.  I started the group with four  families back in 1984 as the Trisomy 9 Support Group which subsequently became Unique.....

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Dr. Shwetha Ramachandrappa

Hello I am Shwetha.  I am a Consultant Clinical Geneticist based at Guys Hospital in London.  I graduated from Oxford Medical school in 2006 and completed my Specialist Training in Clinical Genetics in 2017.  I am passionate about ensuring that advances in genetic technology make a difference to as many people as possible...

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Ben Stern

I initially became involved with Unique shortly after my second daughter, India, was diagnosed with an unbalanced translocation (duplication 18q21.1 to qter, deletion 18p11.32). At the time she was three weeks old and had been admitted to hospital after struggling to breathe...

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Noni de Zoete

I am delighted to become involved with Unique. Our grand daughter Maya has a 10Q26.1 deletion, and after her diagnosis at one month old, I contacted the charity. Beverly and her team gave our family such comfort and support and I decided to run the London Marathon for them...

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