Our Team and Trustees

We have a team of staff dedicated to delivering our mission statement. The team is made up of individuals with a wide range of interests and skills, working in areas such as policy, public affairs, research and public engagement, with backgrounds both in the natural and social sciences.

We are governed by a Board of Trustees made up of representatives of our patient organisations who set the charities strategic aims and monitor the delivery of our objectives. 

The Team

Jayne Spink

Jayne Spink

Chief Executive ,
Genetic Alliance UK

jayne.spink@geneticalliance.org.uk
I joined Genetic Alliance UK in April 2017. As CEO it’s my role to develop strategy together with trustees and staff and to oversee our business support functions - including finance, fundraising and governance. I also provide oversight of our policy and public affairs work, member and public engagement, support services and research. I have a long-standing interest in genetics, dating back to my university studies and subsequent postdoctoral research. I’ve also worked in genetics policy at the Department of Health and immediately prior to joining Genetic Alliance UK I served for 5 years as CEO of the Tuberous Sclerosis Association – one of our member charities. The work of the Genetic Alliance UK continues to have such an enormously beneficial and sustained impact – supporting, campaigning, uniting. The incredible achievements of our member organisations and the communities they serve are inspirational and I feel that it is a real privilege to be part of the genetics and rare disease community and to be a part of the Genetic Alliance UK team.
Farhana Ali

Farhana Ali

Public Affairs Manager,
Rare Disease UK

farhana.ali@raredisease.org.uk
I am responsible for implementing Rare Disease UK’s (RDUK) plan of activity as well as developing RDUK’s future strategy in collaboration with colleagues and the Management Committee. My work spans public affairs, policy, campaigns and communications. I have previously worked as Policy and Public Affairs Officer for poverty relief charity Elizabeth Finn Care. I also have experience working for Amnesty International and in Parliament. I have a degree in Politics and a Masters in International Relations.
Mariana Campos

Mariana Campos

Membership and Public Engagement Manager,
Genetic Alliance UK

mariana.campos@geneticalliance.org.uk
As Membership and Public Engagement Manager, I am responsible for ensuring that we engage effectively with existing and new member organisations, as well as new audiences. My work involves developing high-quality information resources for patients and families. I am also responsible for coordinating the delivery of project work, for example, establishing peer support networks or patient groups for rare and genetic conditions and exploring patient attitudes to genome sequencing.
Jess Bateson

Jess Bateson

Communications Officer,
Genetic Alliance UK

jessica.bateson@geneticalliance.org.uk
I joined Genetic Alliance UK as Communications Officer, after previously working in genome editing research. I am looking forward to using my background in genetics to communicate the latest research concerning people affected by genetic conditions, in a clear and accurate way to our member charities. Within my role, I will be responsible for delivering effective content and campaigns through our digital channels, sharing relevant information with members such as events and reports of interest, and overall, ensuring that we are a representative voice for all the charities that we support. I will also be exploring new and impactful ways to share the work we are involved in and that our channels are effectively reaching and supporting our growing audiences.
Louise Coleman

Louise Coleman

Policy Officer,
Genetic Alliance UK

louise.coleman@geneticalliance.org.uk
As Policy Officer my role is to identify opportunities and risks within current or proposed policy, understand how change is likely to affect patients and carers, and help make sure that the patient perspective is heard. I have an academic background in both the biomedical and political sciences, and am thrilled to be able to draw on both aspects to help me best advocate on behalf of patients with genetic, rare or undiagnosed conditions. I started my professional life in medical research, investigating the genetic basis of cancer and neurodegenerative disorders. More recently I have been working for several years at different disability charities in a variety of roles.
Natalie Frankish

Natalie Frankish

Policy and Engagement Manager - Scotland,
Genetic Alliance UK

natalie.frankish@geneticalliance.org.uk
As Policy and Engagement Manager for 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.
Emma Hughes

Emma Hughes

Policy and Engagement Manager - Wales (Maternity Leave),
Genetic Alliance UK

emma.hughes@geneticalliance.org.uk
As Policy and Engagement Manager for our work in 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.
Amy Hunter

Amy Hunter

Director of Research,
Genetic Alliance UK

amy.hunter@geneticalliance.org.uk
As Director of Research, my job is to ensure that we are active in research that is relevant to patients and families affected by genetic conditions. I work to ensure that we identify and act on any policy implications that arise from our research work, which is often often carried out in collaboration with university researchers and clinicians. 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 patients and their families receive; our work at Genetic Alliance UK in health care research is significant and exciting for this reason.
Miriam Ingram

Miriam Ingram

Digital Communications and Support Officer,
Swan UK

miriam.ingram@undiagnosed.org.uk
As Digital Communications and Support Officer at SWAN UK, my role includes managing relationships with external stakeholders including media and charitable organisations and healthcare professionals. I am responsible for generating communications for SWAN UK members and professionals as well as managing SWAN UK’s social media accounts. My work involves raising awareness of SWAN UK and undiagnosed genetic conditions. I work closely with families to communicate their experiences as well as acting as the first point of contact for enquiries. I also enjoy organising events for SWAN UK families. I have a background in journalism, marketing and events and am passionate about giving people a voice and a platform to tell their stories.
Mary Instone

Mary Instone

Administrator,
Swan UK

mary.instone@undiagnosed.org.uk
My role is to support the SWAN UK team in all their office-based work and to manage the registration of new members. My background is editorial work in trade publishing but I subsequently became involved in the charity world and worked for a national learning disability charity before I came 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 ways to support parents and siblings in that position.
Nick Meade

Nick Meade

Director of Policy,
Genetic Alliance UK

nick.meade@geneticalliance.org.uk
As Director of Policy, I lead our policy work, which focuses on research and innovation to facilitate progress towards cures and treatments for unmet health need, on the commissioning of healthcare services and access to therapies, on genetic testing and genomic technologies, and on reproductive choice. I have a particular interest in controversial issues and regulation such as animal research, embryo research, preimplantation genetic diagnosis, mitochondrial replacement therapy, and gene and stem cell therapy. I represent patients on panels and committees in the UK and Europe, including NHS England, UK Rare Disease Forum, UK Genetic Testing Network, National Institute for Health and Care Excellence and the European Medicines Agency.
Lauren Roberts

Lauren Roberts

Director of Support and National Coordinator for SWAN UK ,
Swan UK

lauren.roberts@undiagnosed.org.uk
My role is to oversee the coordination of SWAN UK, with a specific focus on developing on the ground support for families of children with undiagnosed genetic conditions in their local area. Coordinating SWAN UK builds on my previous experience working for other disability charities such as Kids and Centre 404. I have a Masters in Anthropology and Development studies and enjoy working with families to develop support for their needs. I am also particularly interested in the role social media can play in preventing social isolation.
Amy Simpson

Amy Simpson

Research Associate (Maternity Leave) ,
Genetic Alliance UK

amy.simpson@geneticalliance.org.uk
As Research Associate, I am delivering two key research projects - the psychosocial research arm of the TAIN project, which explores the impact of adrenal insufficiency on parents of affected children, and a feasibility study on the hidden costs of health services for rare diseases for patients and the NHS. My background is in applied health and social care research and in my previous academic role I worked closely with Genetic Alliance UK to facilitate the ‘Risks and Benefits’ work. I am also currently undertaking a PhD, exploring the identities of parents who have a child with an undiagnosed genetic condition. I enjoy working closely with patients and families to really understand the experiences of those affected by genetic conditions, to continue to bridge the gap between research, policy and practice in this field.
Simon Evans

Simon Evans

Interim Finance Director,
Genetic Alliance UK

simon.evans@geneticalliance.org.uk
I joined Genetic Alliance UK in February 2017 as Interim Finance Director. I enjoy helping charities of all sizes improve their reporting systems both monthly and annually by engaging with staff, managers and trustees. I have been working in the Charity Sector since March 2000 previously as Finance Director of Girlguiding UK until 2011 and then continuously for charities like the Charity Finance Group, YMCA , the National Youth Theatre and the Golf Foundation as interim Finance Director. I also enjoy mentoring accounts staff and creating robust and responsive Finance teams that can support the business areas of charities.
Eva Peters

Eva Peters

HR and Governance Officer,
Genetic Alliance UK

eva.peters@geneticalliance.org.uk
My role as HR & Governance Officer is to taking responsibility for and administrating human resources (HR) processes. My work includes working across teams and providing HR information and guidance to the staff. I am also responsible for coordinating meetings of the Board of Trustees, and Finance and Governance committee. I have masters in Human Resource Management and believe it is important to bring the human element to the workplace. Being new to the charity sector, I have found extremely motivating to support people who passionately support others.
Alastair Kent OBE

Alastair Kent OBE

Ambassador ,
Genetic Alliance UK

alastair.kent@geneticalliance.org.uk
I came to Genetic Alliance UK over 20 years ago because I was excited by the challenge that new knowledge in genetics created - the idea that, for people affected by a genetic condition, yesterday's science fiction is tomorrow's clinical service improvement. Trying to transform these possibilities into positive outcomes whilst reducing the potential for abuse is an incredible challenge, and I feel incredibly privileged to work in this field. The fact that Genetic Alliance UK is now a respected and authoritative voice for patients and families is something about which I feel pride, and also a huge sense of responsibility. It is a challenge that excited me on the first day I became aware of the impact of genetic disorders and which continues to excite me today.
Rosa Spencer-Tansley

Rosa Spencer-Tansley

Research Officer,
Genetic Alliance UK

rosa.spencer-tansley@geneticalliance.org.uk
In my role as Research Officer I will be working on the ‘Rare disease and mental health’ project. This aims to help us better understand the impact living with a rare or undiagnosed condition has on emotional wellbeing and mental health, and how current support could be improved for patients and their families. I have a degree in biological sciences and a Master of Research in Psychiatric Genetic Counselling. I also have experience of working in healthcare, supporting and caring for individuals with a range of learning and physical disabilities, as well as emotional and mental health issues. I am particularly interested in the clinical applications of research – how we can translate what we are learning to really make a difference to people’s lives. I am also passionate about raising awareness of mental health and wellbeing.
Leyla Jeylani

Leyla Jeylani

Financial Accountant,
Genetic Alliance UK

leyla.jeylani@geneticalliance.org.uk
As a Financial Accountant, I manage the day to day financial matters of Genetic Alliance UK and I assist the Finance Director with all the financial statements. I am a part qualified accountant and currently undertaking the ACCA professional qualification. I enjoy working in finance and supporting colleagues with any financial queries. I am new to the charity sector as I have worked in the private sector for many years. However, I feel motivated and honoured to contribute to the success of Genetic Alliance UK in supporting patients and their families.

Our Trustees

Christopher Goard

Chair

Christopher’s commercial career spanned almost 30 years with diverse roles in marketing and international business management. Since 2006 he has developed various roles joining us in 2008 as a Trustee rapidly becoming Treasurer and more recently Chairman. In addition he has five years experience as a Non-Executive Director and Chairman with the NHS and is currently a NED with Oxford University Hospitals Trust. He is committed to the future of Genetic Alliance UK and uses his experiences in strategy development, business development and governance to support the charity’s future growth and achievements.

Richard West

Honorary Treasurer

Richard is a patient with a rare genetic illness called Behcet’s syndrome. He is a representative of the Behçet’s Society and has in the past been Secretary of the Behcet’s Society for a long period. He was a Trustee of Genetic Alliance UK before taking the role of Honorary Treasurer. He feels that he represents the interests of smaller charities that may be members of Genetic Alliance UK.

He is also a volunteer and a nominated representative with Eurordis, a European patient organisation for Rare Diseases, to represent the patient’s voice of that organisation at the Patient and Consumer Working Party at the European Medicines Agency and is a self employed Accident Investigator.

 

Rebecca Griffiths

Rebecca is a representative of UKPIPS (UK Primary Immunodeficiency Patient Support), having been diagnosed with Common Variable Immune Deficiency in 2012.

With a degree in Management from the University of Warwick, Rebecca is now a management consultant in London, working at one of the world's largest consulting firms. In particular, Rebecca specialises in the way that people of different ages learn and disseminate information, are educated/trained and how people work collaboratively often across different time zones and language barriers.

With her background as a patient, Rebecca is passionate about Genetic Alliance UK’s work and hopes to bring her experience to bear in the complexities of understanding such a large patient population affected by rare and common conditions.

Dr Mike Knapton

Dr Mike Knapton is a representative from the British Heart Foundation. He is the associate Medical Director for Prevention, Survival and Support at the BHF. Mike is a general practitioner by training having qualified from Cambridge University in 1982. He has recently joined the Board of Cambridge University Hospitals NHS Foundation Trust as a non-executive director.

 

John Mills

John Mills represents Vasculitis UK. He spent 40 years as a practising dentist, retiring in 2006, but contracted vasculitis in 2001 aged 58. He now campaigns for greater awareness of all 18 rare vasculitis diseases, better recognition and diagnosis, improved treatment and more research. John believes that patients who are better informed and educated about their illness are better able to manage it. He works closely with medical professionals, being a patient representative on numerous panels eg: UK Vasculitis Study Group, British Society of Rheumatologists, European League Against Rheumatism and NHS Rheumatoid Specialist Commissioning Reference Group.

Tania Tirraoro

Tania Tirraoro is the founder and CEO of non-profit website, Special Needs Jungle, that helps families with information about Special Educational Needs and child health conditions including rare diseases. Tania is a patient advocate with Ehlers Danlos syndrome. Her two teenage sons also have EDS as well as Asperger syndrome.

Tania's background is in journalism, PR and as a web/social media expert helping charities make their mark online. She has authored several books and includes EDS UK and RareConnect among recent volunteering activities.

Special Needs Jungle have produced resources for parent carers in collaboration with the Department for Education and are partners with patientINFORM, working with publishers of medical journals to provide access to up-to-date research articles to patients and their caregivers. 

Rafael Yáñez

Rafael is a Reader in Advanced Therapy and Director of Planning and Resources at the School of Biological Sciences, Royal Holloway, University of London. He previously held Lecturer appointments with King’s College London and University College London, and received his PhD and BSc in Biochemistry and Molecular Biology from the Autonomous University of Madrid, Spain.

Rafael has a long-standing interest in gene and stem cell therapies, with particular interest in neurodegenerative diseases. He is a member of the Board of the British Society for Gene and Cell Therapy and organises a yearly event on Rare Disease Day.

Robin Nott

Observer

Robin Nott, Observer, is a retired solicitor and partner in a City of London firm where he practised in the commercial and intellectual property field.

Since retiring he has had a number of non-executive directorships and he is a director of Licensing Executives Society (Britain & Ireland), the U.K. chapter of Licensing Executives Society International, the world's leading association of technology transfer and licensing. He also continues to sit on the Intellectual Property Advisory Committee of the BioIndustry Association and the Life Sciences Committee of the Chartered Institute of Patent Attorneys.

 

Phyllis Wong

Observer

Phyllis joined the Genetic Alliance UK board as an Observer in 2013. She is a qualified accountant and trained with an accountancy firm which specialises in the not for profit sector. She is also a rare disease patient. It is from this dual perspective that she is able to contribute her experiences; from her accounting background, to offer advice on governance, and as a patient, to ensure the patient voice is represented at every level of Genetic Alliance UK. She is passionate about her involvement in the work and direction of Genetic Alliance UK.

 

Nicole Yost

Observer

Nicole joined Genetic Alliance UK as an Observer in 2012. She is a healthcare communications professional with 15 years' experience spanning medical journalism, editorial, branding, public relations and marketing communications roles. She is currently a Senior Director within the PR team of Ogilvy Healthworld. Nicole has a strong understanding of the media and was involved with the rebrand of Genetic Alliance UK. Nicole has a degree in Medical Sciences and an MBA with distinction from Warwick Business School. Having developed an understanding of Genetic Alliance UK’s aims and objectives through the rebrand, Nicole is keen to bring her experience to the board.

Jill Walton

Observer

Jill Walton currently works as a nurse coordinator and adviser for 5 young onset rare dementia support groups affiliated to the Dementia Research Centre at the National Hospital for Neurology and Neurosurgery (UCL).

With over twenty years nursing experience, she has degrees in psychology and gerontology and has combined practical caring with academic research and learning. Jill believes that the people with a diagnosis of dementia, as well as those caring for and interacting with them need to be well informed and resourcefully equipped.

Two of the five groups Jill coordinates are for people affected by rare, autosomal dominant, directly genetically inherited forms of Alzheimer’s disease and frontotemporal dementia which run in families and typically affect people in their 30s, 40s and 50s.

In addition to her work with support groups, she is the founder of ‘Dementia Dimensions’ a resource through which she delivers tailored training and presentations to a range of professionals.

Harriet Teare

Observer

Harriet is a researcher in healthcare and policy at the Centre for Health, Law and Emerging Technologies, University of Oxford. Her research interests relate to translational medicine, and the crossover between research and clinical care. She is currently exploring the role of participants in medical research, with the view to improving governance infrastructure to support communication and interactive engagement, with particular focus on genome medicine.

Harriet contributes to a number of specific research projects, including providing research governance and ethical support to the DIRECT project – a European collaboration exploring stratification in Type 2 diabetes, the Rudy Study – a research network for rare diseases of the blood, bone and joints, and the Genetics Clinic of the Future – a Horizon 2020 project mapping the complex challenges that will need to be tackled to introduce genome sequencing more widely into the clinic. Harriet has a DPhil in Chemistry from Merton College, Oxford, and previously worked as a senior policy advisor at Cancer Research UK, focusing on policy issues relating to science and research, and public health. Harriet joined the board of trustees as an observer in 2015, as a keen supporter of the work that the charity undertakes, and to contribute her experience in research areas of particular relevance to Genetic Alliance UK.

Caroline Harrison

Observer

Coming Soon

Dr Fiona Hemsley

Observer

Coming Soon

Dr Susan Walsh

Trustee

Susan has a science background with a degree in Biochemistry and a Ph.D. She joined the charity sector in 2002. She is the Head of Research and Specialist Services at the Chronic Granulomatous Disorder (CGD) Society as well as leading the development ofPrimary Immunodeficiency UK (PID UK) from its inception in 2013, as its director. Susan was a member of the Rare Disease UK (RD UK) Working Group on Coordination of Research in 2010 and is an ex-trustee of the Association of Medical Research Charities and served recently on two NICE committees as a patient advocate. She is a member of the UK Gene Testing Network Clinical and Scientific Advisory Group, the NHS Scotland National Plasma Product Expert Advisory Group, the NHS England Clinical Reference Group on Immunology and Allergy and RD UK’s Patient Empowerment Group focused on pushing forward the UK Strategy for Rare Diseases.

Dr Jenny Versnel

Trustee

Dr Jenny Versnel is Director of Research and Business Innovation at Muscular Dystrophy UK.  With a PhD in Biotechnology from the University of Cambridge, Jenny has worked as a scientist in the charitable, academic and commercial sectors for more than 20 years.  The understanding of the causes of neuromuscular conditions has progressed significantly over recent years to an exciting stage where clinical trials are progressing and treatments are emerging for some conditions.  Jenny works with clinicians, scientists and individuals affected by neuromuscular conditions to develop an effective strategy that will accelerate and maximise the impact of the research funded by Muscular Dystrophy UK.

Jenny brings experience of drug development pathways and understands the importance of trial design to ensure the outcome measures are relevant to patients. In the charitable sector she has held numerous board positions that have helped to shape and influence policy across different disease areas.  Jenny brings experience of engaging patients and researchers and also developing partnerships to prioritise research.

Fiona Macrae

Observer

Lisa Walker

Observer

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