Meet the team

Genetic Alliance UK makes a huge difference to the lives of people with a genetic, rare or undiagnosed condition thanks to the strengths and commitment of our staff, trustees and members. 

Our highly experienced and dedicated staff lead on daily activities at the charity. With strong expertise across the charity, health, research and public policy sectors, we’re proud of the high impact that our staff team has in meeting our goals.

The overall strategic direction and governance of Genetic Alliance UK is overseen by our Board of Trustees. 9 of our trustees are elected by members to ensure that the challenges and opportunities facing our member organisations and the people they represent are at the heart of everything we do. 3 of our trustees are appointed to bring their diverse perspectives and professional expertise to the Board. Many of our trustees have lived experience of genetic and rare conditions, either personally or through a close family member.

The Genetic Alliance UK team stood in front of a colourful background. a note on the wall, written in white in a black bubble, reads 'Together'

Our staff

Headshot of Louise Fish, Genetic Alliance UK's Chief Executive. She stands by the Thames river at the Parliament building. She wears a black suit and has shoulder length, black hair.

Louise Fish

Chief Executive
Headshot of Louise Fish, Genetic Alliance UK's Chief Executive. She stands by the Thames river at the Parliament building. She wears a black suit and has shoulder length, black hair.

Louise Fish

Chief Executive

I am passionate about working together with our member charities and support groups to improve the lives of 3.5 million people in the UK living with genetic and rare conditions. I was previously Chief Executive at the Tuberous Sclerosis Association (TSA), one of Genetic Alliance UK’s members. Prior to joining the TSA, I worked as a consultant advising a range of organisations across the rare disease sector such as healthcare charities, Royal Colleges and pharmaceutical companies. Earlier in my career I worked in-house as Director of Communications and Engagement at the NHS Confederation, and Director of Communications at the National Institute for Health and Care Excellence (NICE). I have also been appointed in a personal capacity to represent the rare community as a patient and public voice member of NHS England’s Rare Disease Advisory Group and Patient and Public Voice Assurance Group.

A headshot of Mary, Genetic Alliance UK's HR team. She has long blonde hair and wears a dark suit jacket and floral shirt. She stands by the Thames river at the Westminster Parliament building.

Mary Edwards

Director of Resources
A headshot of Mary, Genetic Alliance UK's HR team. She has long blonde hair and wears a dark suit jacket and floral shirt. She stands by the Thames river at the Westminster Parliament building.

Mary Edwards

Director of Resources

My mission is to lead on making sure our corporate services are efficient, cost effective and support our strategic plan, objectives and people. As a HR professional by background, I have extensive experience of managing charity resources (most recently at Contact) as well as membership forums (at Carers UK). I am also a qualified Mental Health First Aider.

A headshot of Amy, from Genetic Alliance UK's Research team. She has shoulder length hair and smiles with a friendly smile. She stands by the Thames river at the Westminster Parliament building.

Amy Hunter

Director of Research
A headshot of Amy, from Genetic Alliance UK's Research team. She has shoulder length hair and smiles with a friendly smile. She stands by the Thames river at the Westminster Parliament building.

Amy Hunter

Director of Research

My job is to ensure that we are active in research that is relevant to individuals affected by genetic and rare conditions. We generally have a focus on cross-condition work and projects that will support our mission as an alliance and policy organisation. We often collaborate with university researchers and clinicians, and in addition to being active in research we facilitate the involvement of people living with genetic and rare conditions as partners in research. 

My academic background is in molecular biology and I have had several managerial roles in biomedical and psychosocial research. My personal motivation is to see real evidence-based improvements in the support that individuals living with genetic and rare conditions, and their families and carers, receive; our work at Genetic Alliance UK in health care research is significant and exciting for this reason.

A man in a navy suit and dark red tie. He stands by the Thames river at the Westminster Parliament building.

Nick Meade

Director of Policy
A man in a navy suit and dark red tie. He stands by the Thames river at the Westminster Parliament building.

Nick Meade

Director of Policy

I lead our policy work and manage the policy and public affairs team, as we work to improve outcomes for everyone affected by genetic, rare and undiagnosed conditions, through evidence-based influencing and campaigning. We have long-standing focuses on access to therapies for rare conditions, genomic medicine and the continued implementation of the UK Strategy for Rare Diseases. Our approach has always been to work collaboratively and creatively with statutory organisations and policy makers, balancing ambition with pragmatism.

It is important to the team that our members have a say in the policy work that we do; we work closely with our communications team to achieve this. We retain our long-standing interest in sometimes controversial issues that affect our members, including animal research, research involving human embryos, reproductive choice in the context of rare conditions, preimplantation genetic diagnosis, mitochondrial replacement therapy, and gene and cell therapy.

A headshot of Jen, Genetic Alliance UK's Membership Communications Manager. She has her hair pinned up in plaits and she smiles wearing bright red lipstick. She stands by the Thames river at the Westminster Parliament building.

Jen Barley

Head of Membership and Communications
A headshot of Jen, Genetic Alliance UK's Membership Communications Manager. She has her hair pinned up in plaits and she smiles wearing bright red lipstick. She stands by the Thames river at the Westminster Parliament building.

Jen Barley

Head of Membership and Communications

As an engagement enthusiast, both professionally and personally, I have joined Genetic Alliance UK to manage many aspects of our member network including member communications, events and membership.  I am always looking for ways to enhance member experience and to improve and diversify engagement.

I have worked in membership, engagement and communications for 20 years in a variety of roles at the Royal College of Emergency Medicine, The House of St Barnabas, Blind Veterans UK, RNIB and Channel 4.

Claire Cocks

Head of Fundraising

Claire Cocks

Head of Fundraising

My role is to raise much-needed income to support the work of Genetic Alliance UK, Rare Disease UK and SWAN UK; advocating for fast and accurate diagnosis, good quality care and access to the best treatments for those in the genetic, rare and undiagnosed communities.

I work with Trusts & Foundations and Major Donors to help us realise our strategic aims, provide support to community and corporate fundraisers to help them reach their fundraising goals and reach out to the wider public to raise awareness of genetic, rare and undiagnosed conditions. I have worked in fundraising for a over a decade and have a background in the arts and higher education.

Natalie Frankish

Head of Policy and Engagement Manager, Scotland

Natalie Frankish

Head of Policy and Engagement Manager, Scotland

I represent Scottish patients on a number of policy making groups, run our virtual patient panel and support patients wishing to start a support group for their condition through our Helping Patients Project. I studied Law and Politics before working on placement at the Scottish Government, developing adult support and protection legislation. I also worked for several years with families with long term health conditions. I am passionate about finding out what really matters to patients and their families and the best part of my job is seeing what a difference can be made when patients have a say in our their healthcare is delivered.

A headshot of Justin, Genetic Alliance UK's Corporate Fundraising Manager. He has a bald head and smiles with a friendly smile. He wears a navy suit and tie and stands by the Thames river at the Westminster Parliament building.

Justin Khodaiji

Head of Corporate Partnerships
A headshot of Justin, Genetic Alliance UK's Corporate Fundraising Manager. He has a bald head and smiles with a friendly smile. He wears a navy suit and tie and stands by the Thames river at the Westminster Parliament building.

Justin Khodaiji

Head of Corporate Partnerships

I lead the drive to secure funding for our Rare Disease UK campaign, Rare Disease Day, and our community appeal. I manage our key strategic partnerships with the life-sciences industry. I am passionate about forging innovative partnerships by developing new ways of aligning company strategy and organisational mission. I believe progress through partnerships is the key to effecting change.

Emma Hughes

Policy and Engagement Manager – Wales

Emma Hughes

Policy and Engagement Manager – Wales

My work includes policy, public affairs, communications and events. I work to generate and communicate a patient and family viewpoint on policy and practice relating to the development of genetics in healthcare in Wales. My background is in Law, Marketing and Communications, and I have previously worked in roles consulting with young people on disability rights and supporting projects benefiting the health and social care of children in developing countries. I believe that the patient voice is the single most powerful aspect in the development and implementation of new services, information, and support.

Miriam Ingram

Communications and Engagement Manager, SWAN UK

Miriam Ingram

Communications and Engagement Manager, SWAN UK

I am Communications and Engagement Manager for the support network SWAN UK (syndromes without a name), which is run by Genetic Alliance UK. SWAN UK is the only dedicated support network in the UK for families affected by undiagnosed genetic conditions. In my role, I work to ensure that our community of families are supported through regular communications, events and high quality information.I work with the SWAN UK community, the Genetic Alliance UK team, including our Parent Reps, as well as external stakeholders to make sure that the voices of the SWAN UK community are heard and that they are supported through a range of activities and opportunities. 

I manage all SWAN UK communications including our social media channels and newsletters and coordinate press enquiries.I am passionate about raising awareness of what it means to have an undiagnosed condition and SWAN UK and lead on the planning and communications for our annual awareness day, Undiagnosed Children’s Day.

A headshot of Sophie, Genetic Alliance UK's Policy team. She has long brown hair and smiles with a friendly smile. She stands by the Thames river at the Westminster Parliament building.

Sophie Peet

Policy and Stakeholder Engagement Manager
A headshot of Sophie, Genetic Alliance UK's Policy team. She has long brown hair and smiles with a friendly smile. She stands by the Thames river at the Westminster Parliament building.

Sophie Peet

Policy and Stakeholder Engagement Manager

I sit within the Policy team at Genetic Alliance UK. It is my role to analyse and keep up to date with the latest policy advancements in the rare disease space. I also engage our members and relevant stakeholders to ensure the voices of those affected by rare, genetic and undiagnosed conditions are heard during policy development. I cover a wide-range of policy topics including but not limited to, genomics, UK rare disease policy, the regulation and development of advanced therapy medicinal products (ATMPs), health technology appraisals of treatments and reproductive choice.

Previously I have experience working in the pharmaceutical industry, specifically in clinical trial operations where I worked on an early access to medicine scheme. I have a MSci in Natural Sciences. 

Bev Defreitas

Executive Assistant

Bev Defreitas

Executive Assistant

As part of the Operations team I provide support to the Chief Executive Officer, Director of Resources and the Board of Trustees as well as carrying out HR admin duties. My extensive Executive Assistant experience has come from working within the public, charity and more recently, the private sector. Prior to joining Genetic Alliance UK, I was a Freelance Virtual PA within the private sector for a strategic pricing and market access consultancy, specialising in rare diseases and a Divisions Manager at The Royal College Psychiatrists.

Having been diagnosed with Sarcoidosis at a time when very little was known about the disease, and the length of time it took to get a diagnosis, I understand how important it is for patients to have the support and resources to assist them in managing their rare disease. 

Matt Hamer

Senior Communications Officer

Matt Hamer

Senior Communications Officer

I help to produce innovative and engaging content across all our brands. I manage the social media platforms and website for Genetic Alliance UK and long standing Projects, Rare Disease UK and SWAN UK. I will also be popping into many of your inboxes with our informative newsletters. 

With a background in graphic design I work across all our teams to support the production of exciting visual communications and ensure our memorable brand is always represented in the best way possible. Prior to my role with Genetic Alliance UK, I worked at other charities, using my communication and design expertise to increase engagement, helping the organisations, and those they support to be heard.

Mary Instone

Membership Support Officer

Mary Instone

Membership Support Officer

I support our work with existing and potential member organisations, and with the SWAN UK community. I am the first point of contact for new SWAN UK members, ensuring they are supported with information, signposting and networking opportunities. I also handle initial interest from patient organisations who wish to become members of Genetic Alliance UK. I produce reporting and statistics on all aspects of membership to help quantify and encapsulate our work for a variety of audiences. My background is editorial work in trade publishing but I subsequently worked for Mencap before coming to Genetic Alliance UK. I am particularly interested in the impact that raising a child with an undiagnosed genetic condition has on the family as a whole, and in finding new and innovative ways to support parents and siblings.

A headshot of Jen, from Genetic Alliance UK's Research team. She has grey hair and smiles with a big friendly smile that shows her teeth. She stands by the Thames river at the Westminster Parliament building and wears a green scarf and brown cardigan.

Jennifer Jones

Research Associate
A headshot of Jen, from Genetic Alliance UK's Research team. She has grey hair and smiles with a big friendly smile that shows her teeth. She stands by the Thames river at the Westminster Parliament building and wears a green scarf and brown cardigan.

Jennifer Jones

Research Associate

My main task is to implement research studies and analyse data from people living with genetic, rare or undiagnosed conditions. We aim to better understand their lived experience and to feed into our policy work to ensure relevant and meaningful change. I completed my PhD at the London School of Hygiene and Tropical Medicine investigating the narratives of people who had been diagnosed with bladder or kidney cancer focussing on the time leading up to diagnosis.

I am committed to ensuring that the voices of those affected by genetic, rare or undiagnosed conditions are heard through robust and reliable research.

A headshot of Rachel, Genetic Alliance UK's Policy team. She has long brown hair that falls behind her shoulder. She wears a white cardigan and glasses. She stands by the Thames river at the Westminster Parliament building.

Rachel McEleny

Policy and Public Affairs Manager
A headshot of Rachel, Genetic Alliance UK's Policy team. She has long brown hair that falls behind her shoulder. She wears a white cardigan and glasses. She stands by the Thames river at the Westminster Parliament building.

Rachel McEleny

Policy and Public Affairs Manager

I work with the Policy Team at Genetic Alliance UK to raise the profile of rare conditions in Parliament and assist on policy projects. I provide the secretariat for the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed conditions and work with the policy team to deliver other parliamentary activities in Westminster. I support our Rare Disease UK campaign to ensure the implementation of the UK Rare Diseases Framework, this work includes providing the secretariat for the Rare Disease UK Patient Empowerment Group; a collective of patient representatives who work to support the advancement of the UK Rare Diseases Framework.

I have previously worked on the Rare2030 Project to influence and guide European rare disease policy and have worked on a project collating the impact of the Covid-19 pandemic on people living with rare conditions. I have an undergraduate degree in French and International Relations.

Our trustees

Elizabeth Porterfield. An older woman with short hair and glasses. She wears a white top with a blue cardigan and stands in front of a white wall

Elizabeth Porterfield

Chair
Elizabeth Porterfield. An older woman with short hair and glasses. She wears a white top with a blue cardigan and stands in front of a white wall

Elizabeth Porterfield

Chair

Elizabeth (Liz) cared for her son who had Huntington’s Disease. Prior to retiring, Liz was Head, Strategic Planning and Clinical Priorities with the Scottish Government Health & Social Care Directorates. She led the development of several clinical strategies including the National Clinical Strategy, the Cancer Strategy and the Scottish Rare Disease Plan. She was a member of the implementation group and of the UK Rare Disease Forum. She was the Government sponsor of Scotland’s National Services Division which commissions all national (including across UK) specialist and screening services, such as the Scottish Molecular and Cytogenetics Consortium and the Molecular Pathology Consortium. She was responsible for putting in place the first ever cancer genetics services for breast, colorectal and ovarian cancer. Liz contributed to the establishment of the Innovative Healthcare Delivery Programme (IHDP) and the Scottish Genomes Partnership.

Sue Millman, an older woman with short grey hair. She wears a dark orange scarf and matching coloured jumper. She stands in front of a white wal

Sue Millman

Vice Chair
Sue Millman, an older woman with short grey hair. She wears a dark orange scarf and matching coloured jumper. She stands in front of a white wal

Sue Millman

Vice Chair

Sue has spent her career in the voluntary sector. Initially Sue worked with people who were homeless or needing support in their housing situation. She became CEO of a youth homeless charity, Capital Housing Project; then CEO of Alcohol Recovery Project, a housing association also providing day services across London; and her last post in the housing sector was as Director of Support at Advance, a national housing association providing services to people with mental ill-health, and learning disability. In 2007 Sue became CEO of Ataxia UK. The ataxias are degenerative, life-limiting neurological conditions affecting balance and coordination for which there are no treatments and cures; there are around 12,000 people with ataxia in the UK. Over the last 15 years Sue has become familiar with the policy issues affecting the rare disease and neurological environment. She is a Trustee of the Neurological Alliance, serving for a number of years as Vice Chair. 

Gloria Clark. She has blonde, shoulder length hair and a bright, multicoloured patterned scarf over a red cardigan

Gloria Clark

Chair of People & Policies Committee
Gloria Clark. She has blonde, shoulder length hair and a bright, multicoloured patterned scarf over a red cardigan

Gloria Clark

Chair of People & Policies Committee

Gloria has spent much of her career enabling the voice of patients and consumers to be heard. She is a strong advocate of involving people in the development and improvement of the services they access. Following an extensive career in the private sector, she has worked for the Patients Association and the NHS as well as in consultancy. She has committee experience in a number of sectors, having been lead governor at her local hospital as well as chair of governors at a secondary school. She is currently a trustee at Headway Somerset, which supports people affected by acquired brain injury; and chairs the boards of three grant-giving charities. She is a volunteer adviser at Citizens Advice. With a family member who has Tuberous Sclerosis, Gloria has first-hand experience of the challenges facing people with a genetic disease. She is a long-term member of the Tuberous Sclerosis Association and, as a trustee of Genetic Alliance UK since 2017, has aimed to contribute to its vital work supporting and lobbying for all those with rare and genetic disease.

David Ramsden, a man with short hair. He wears a blue suit jacket over a blue fleece

David Ramsden

Treasurer and Chair of Finance & Governance Committee
David Ramsden, a man with short hair. He wears a blue suit jacket over a blue fleece

David Ramsden

Treasurer and Chair of Finance & Governance Committee

David Ramsden has been Chief Executive of the Cystic Fibrosis Trust since December 2016. He has almost 20 years experience of working in the charity sector and is a Fellow of the Institute of Chartered Accountants of England and Wales. From 2006 to 2016 David led BBC Children in Need as it raised over £400 million and diversified its income base with new programming and commercial partnerships. He  reinvigorated the “Pudsey” brand and grew the scale and scope of the Appeal Campaign – including a wide ranging digital presence. In parallel to this, David ensured that BBC Children in Need focused its grant making efforts – enabling many smaller projects to receive funding and that the money raised by the public was  used effectively to change young lives across the UK. He also emphasised the Charity’s role as a learning organisation that identifies and promotes best practice in how to make a difference to young lives. He previously worked for the British Red Cross and Ernst & Young. David was born in Lincolnshire, grew up in Nottinghamshire and now lives in London with his wife, and two young children.

Lara Bloom

Lara Bloom

Lara is the President and CEO of The Ehlers-Danlos Society which is responsible for globally raising awareness of rare, chronic, and invisible diseases, specialising in the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. Lara leads coordinated medical collaboration, raising funds for research and focuses on global progression, education and awareness. Her passion is pushing boundaries and fighting for progression in patient engagement and global collaboration, and she was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, in March 2020. Lara is a published author in various renowned journals and speaks worldwide at conferences, policy meetings, corporate and fundraising events and academic lectures as an expert keynote speaker. 

Phillippa Farrant. She has died red hair tied to the back. You can see the fringe from the camera angle. She wears a bright multicoloured scarf with a floral pattern and a light blue jumper. She smiles at the camera in front of a white wall

Phillippa Farrant

Phillippa Farrant. She has died red hair tied to the back. You can see the fringe from the camera angle. She wears a bright multicoloured scarf with a floral pattern and a light blue jumper. She smiles at the camera in front of a white wall

Phillippa Farrant

Phillippa has been involved with several charities over the years and has knowledge of neuromuscular conditions, along with experiences of meeting people from different sections of the rare community. She has served two terms as a Trustee for MDUK which covers all neuromuscular conditions, and at present, is the Adult Support Worker at Wolfram Syndrome UK and is a keen campaigner to improve the lives of families affected by this, and other rare conditions. Phillippa has many years’ experience of working in the rare disease field, on various aspects and meetings involving parliamentarians, clinicians, scientists and commissioners, and has been part of research projects and knows the challenges to come going forward. On a personal level Phillippa has cared for her own child with a rare disease and works as a carer for someone with a rare disease, so she brings multiple perspectives to her role as a trustee.

Headshot of Toby Hannam, his body faces to the right and he wears a suit with a light blie shirt and dark red tie. He faces his head toward to camera with short curled hair and teeth slightly showing with his smile

Toby Hannam

Headshot of Toby Hannam, his body faces to the right and he wears a suit with a light blie shirt and dark red tie. He faces his head toward to camera with short curled hair and teeth slightly showing with his smile

Toby Hannam

Toby is a health policy and public affairs expert who has spent the last decade working in consultancy and in the UK parliament. Throughout his career, he has developed a deep knowledge of the UK health policy environment, with a particular interest in diagnostics and genomics. Toby supports clients to develop successful engagement campaigns that ultimately improve patient outcomes and service delivery. Through these experiences he was introduced to the leadership of the Genetic Alliance. Having personally experienced the transformational nature of a fast and accurate diagnosis, Toby has a particular passion in utilising his skills and knowledge to support people living with genetic conditions and their families. 

Sara Hunt. She has long blonde hair. She wears a blotted blown and grey top and dark rimmed glasses. She smiles with a big smile in front of a white wall

Sara Hunt

Sara Hunt. She has long blonde hair. She wears a blotted blown and grey top and dark rimmed glasses. She smiles with a big smile in front of a white wall

Sara Hunt

Sara is the CEO and founder of Alex, The Leukodystrophy Charity, the only UK charity supporting everyone affected by leukodystrophy, a group of rare neurodegenerative conditions. The charity was established in 2004, following the diagnosis of leukodystrophy in both her sons. Although Sara has no professional experience in healthcare or the charity sector, she used the passion inspired by her sons’ diagnosis, administrative skills and her personal experiences living with leukodystrophy to develop Alex TLC into an internationally recognised centre of excellence. Utilising an extensive stakeholder network and staff lived experience, Alex TLC works with health and research organisations to provide support and improve outcomes for leukodystrophy patients, and those that care for them. Sara is responsible for a team of 26 staff and represents Patient Voice on the Development Committee of the new NHS England Leukodystrophy Service and Clinical Patient Registry.

Neil McClements headshot. He stands outside in front of a hedge. He wears an open suit jacket and light pink shirt. He has very short hair that is grey around the sides and a beard and moustache a similar length that frames his mouth. He smiles, looking into the lens of the camera

Neil McClements

Neil McClements headshot. He stands outside in front of a hedge. He wears an open suit jacket and light pink shirt. He has very short hair that is grey around the sides and a beard and moustache a similar length that frames his mouth. He smiles, looking into the lens of the camera

Neil McClements

Neil is a former trustee of Haemochromatosis UK, where he now serves as Chief Executive (appointed June 2019). He previously led a rare disease charity that supports people affected by adrenal insufficiency. He was awarded the National Patient Safety Learning Award, and was a finalist in the AbbVie Better Health Awards, having launched a project as a volunteer to improve nursing best practice for people affected by haemochromatosis, myeloproliferative disorders and rare cancers. Neil is currently a trustee of the British Liver Trust where he advises on volunteer management and fundraising.

Dr Shehla Mohammed

Dr Shehla Mohammed

Shehla is a paediatric clinical geneticist with 28 years’ experience predominantly in rare genetic conditions and in the care of children and families with complex life-limiting disorders. Until 2017, she had been Head of Service of the Guy’s Regional Genetics Service for 20 years. Shehla has a special interest in translating new technologies into a clinical setting and to enable the successful delivery of multidisciplinary and patient-focused services. With a strong clinical and managerial background she has successfully advocated for rare diseases and has developed and leads national Highly Specialist Services for a number of complex disorders with colleagues from the dedicated Rare Diseases Centre at St Thomas Hospital, London. Shehla has been the Principal Investigator in Phase III clinical trials whilst fostering international collaborations to improve patient outcomes. She is currently a member of the Highly Specialised Technologies Evaluation Committee at NICE. 

Greg Stevenson. He has a bald head and grey short facial hair. He has a kind smile and wears a bright blue jumper and light blue shirt

Greg Stevenson

Greg Stevenson. He has a bald head and grey short facial hair. He has a kind smile and wears a bright blue jumper and light blue shirt

Greg Stevenson

Greg worked in the pharmaceutical industry since graduating from the University of St Andrews 30 years ago. In that time, he focussed on ensuring new medicines get to patients as quickly and safely as possible, initially at Janssen (part of Johnson and Johnson) then at Roche where he was latterly Head of Policy, Partnership and Negotiation for the UK. This work included negotiation and collaboration with Governments, Parliaments and Assemblies, the NHS and patient groups. Many medicines were first in class (able to treat previously untreatable conditions) and needed work to develop new clinical pathways across health systems to ensure patients could access them. Greg recently left his corporate career to set up his own healthcare consultancy business. This has allowed him to work across more sectors, including academia and patient groups, while continuing to work with companies across healthcare. He has two grown up children, one of whom lives with the challenges of Neurofibromatosis Type 1. 

Sarah Wynn. A middle aged woman with shoulder length blonde hair and a big smile that shows her teeth. She wears a green jumper, and a white colour from a shirt underneath pokes out the top. She poses in front of a white wall

Sarah Wynn

Sarah Wynn. A middle aged woman with shoulder length blonde hair and a big smile that shows her teeth. She wears a green jumper, and a white colour from a shirt underneath pokes out the top. She poses in front of a white wall

Sarah Wynn

Sarah has a PhD in Genetics from Imperial College London and nine years postdoctoral research experience in London and Hong Kong. Sarah has been the CEO of Unique (the organisation supporting all those affected by rare chromosome and gene disorders) since 2021 but her family have been Unique members since 2004 when a rare condition was diagnosed in her family. Sarah is a member of a number of advisory boards and committees, including the Clinical Reference Group for Genomics; DECIPHER data access committee; the Joint Committee on Genomic Medicine and the Manchester Rare Conditions Centre. She is also on the scientific advisory board for Rare Disease Hong Kong and the Manchester Biomedical Research Centre. Sarah is a member of a number of professional bodies, including the BSGM and the Royal Society of Biology.