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.

Meet the Staff

Beverly Searle BSc(Hons) PhD CBiol MRSB

Hello! I'm the CEO and have been passionately involved with Unique since the birth of my daughter Jenny in 1990, first as a volunteer and since 1999 as a staff member...

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Craig Mitchell BA(Hons), PGCE, MInstF(Dip)

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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Arti Patel, BSc (Hons)

I was delighted to join the Unique team in August 2015 as an Information Officer. My role is to answer queries from new and existing family members and professionals...

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Claire Andersen BSc (Hons) PhD

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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Marion Mitchell

I joined the group in May 1995, just after my son Robert was diagnosed (at the age of 1) with two identical markers – resulting in a rare 48 chromosome inverted duplication of chromosome 15q12-q14....

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Louise Jeffree

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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Anna Pelling BSc(Hons) PhD

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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Sarah Wynn PhD

Hi, I'm Sarah. I'm really pleased to have recently returned to work for Unique as one of the Information Officers, working on the helpline to support families.

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Francesca Wicks BSc(Hons)

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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Charlotte Pemberton MSc

Hi I am Charlie. Having just completed a Masters in Genetic and Genomic Counselling I am delighted to join the brilliant team at Unique in the role of Information Officer where I can put my recently acquired skills ........

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Gemma Mitchell

Hello, I am Gemma. I work as an Administration Officer for Unique.

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Meet the Trustees

Helen Campbell - Chair of Trustees

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

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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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James Toop

James is the newest member of Unique's board of Trustees, having joined us towards the end of 2017. With a background in IT, software and data security, he brings much-needed skills to the board....

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Sophie Sainty

I have an 11 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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Gillian Manvell

In 1983 my partner, Peter, and I first met as founder members of a company designing technology for schools; 30 years later we still run the company. In 1990 our first child, Lucy was born with an unbalanced translocation (10p13pter-/dup5q35.2qter+) and I ...

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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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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

I am Edna Knight, Unique’s Life President and a Trustee. I started the group with four other families back in 1984. I have been blessed with four daughters and in 2012 a little grandson Jack who is adorable...

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