|Alastair Kent OBE, Director
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.
|Farhana Ali, Public Affairs Manager
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.
|Buddug Cope, Director of Development
As Director of Development, I work to transform ideas into projects and activities, finding opportunities for us to make a positive difference in the lives of everyone affected by a genetic condition.
With a degree in Biochemistry and Masters in Science Communication, I enjoy bringing my knowledge and understanding of bioscience together with my communication skills and passion for helping individuals and families. I relish the challenges of my role, and enjoy making new contacts and telling stakeholders - both old and new - about who we are, our work and the impact that we achieve. I welcome the opportunity to make new contacts and am pleased to discuss ideas for partnership and collaborative working, just get in touch.
|Natalie Frankish, Development Officer - Scotland
As Development Officer 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, Development Officer - Wales
As Development Officer 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, Senior Research Manager
As Senior Research Manager, 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.
|Nick Meade, Director of Policy
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.
Emily Muir, Public Affairs Assistant
As Public Affairs Assistant I support Genetic Alliance UK’s policy and public affairs work – with a particular focus on the Rare Disease UK initiative. As part of the policy team I provide assistance with analysing, researching and briefing on parliamentary and policy developments across the UK.
I studied Biomedical Sciences at the University of Warwick and previously worked in the field of Learning Disability - interning for the Challenging Behaviour Foundation. I worked across a diverse range of research, policy & influencing projects - helping to give families a voice nationally. I firmly believe that the patient experience should inform all aspects of policy and public affairs and I look forward to communicating the patient viewpoint to a range of stakeholders.
|Lauren Roberts, Coordinator, SWAN 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 their needs. I am also particularly interested in the role social media can play in preventing social isolation.
|Amy Simpson, Research Associate
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.
Beth McCleverty, Policy and Communications Assistant
My role as Policy and Communications Assistant is to centralise communications within the organisation from within the policy team. This includes the management of social media content and communications with members and external stakeholders, as well as responding to enquiries from patients on a variety of issues relating to genetics. I also support the work of the policy team.
I have an MSc in Public Policy from UCL and have previous experience interning at a patient organisation, and in international development and human rights contributing to campaigning, parliamentary and policy work.
Genetic Alliance UK, a company limited by guarantee and a registered charity, is governed by its Board of Trustees. The Board’s role is to set the charity's strategic direction, monitor the delivery of the charity's objectives, uphold its values and governance and guide, advise and support the Director and the team to achieve its aim and mission.
The Board membership consists of Trustees who are elected members with full voting rights (and are directors of the company for the purposes of company law). Observers are non-voting members of the Board. The Board of Trustees, listed below, is led by the Chairman, Christopher Goard and meets quarterly:
Ruth Abuzaid (Vice Chair)
Ruth represents the Huntington’s Disease Association (HDA) where she is the Deputy Head of Advisory Service. In this role she line manages a team of 14 Specialist HD Advisers and works on a number of development projects. Ruth is passionate about supporting young adults at risk of genetic diseases, and was a co-founder of the 'European HD Working Group for Young Adults'. Ruth also co-founded the 'London Neurological Conditions Group'. Ruth's background is in Physiotherapy. Ruth hopes that by bringing knowledge from the HDA and the families they work with, that she can have a positive input into the strategic oversight of Genetic Alliance UK.
Professor John Dodge
John was Nuffield Professor of Child Health in Queen’s University, Belfast and is now an Honorary Professor in Swansea University. He has been a member of numerous national and international committees, examined in medical schools worldwide, and acquired clinical and administrative experience on both sides of the Atlantic and in developing countries. He continues his research interests in Cystic Fibrosis and other genetic disorders, and is Chairman of Shwachman-Diamond Support (UK). He was a member of the WHO Advisory Panel on Human Genetics for 22 years, and is active in the European Association of Paediatric Societies’ Working Group on Rare Diseases. He hopes that his experience and enthusiasm will be useful to Genetic Alliance UK.
Christopher has served as Chair of Genetic Alliance UK and currently serves on the Finance and Governance Group. He brings wide experience to the Trustee role as Chair of the Medical Advisory Service and through other patient support groups.
As a member of the Chartered Management Institute he maintains professional management status with access to its research facilities and to those of the Chartered Institute of Personnel and Development. During a career in the pharmaceutical industry he also held senior management roles in Medical Sciences Liaison, Marketing and Government Affairs. Concomitantly he was a Course Director and Tutor for the Research Council’s Graduate Schools Programme.
Christopher strongly supports the role of Genetic Alliance UK in bringing the patient voice into the health policy debate.”
Sally is a representative of Antenatal Results and Choices (ARC), where her role includes staffing a national helpline, moderating online forum groups and facilitating support meetings for bereaved parents. She has worked in the voluntary sector for 14 years and has a great deal of experience and a particular interest in the provision of high quality information and support for people dealing with health-related difficulties and/or loss and bereavement. She is also interested in staffing issues and has formal and informal supervisory experience within small busy teams. She strongly supports the goals and ethos of the Genetic Alliance and is pleased to be able to contribute to the organisation’s important work for individuals and families affected by genetic conditions and the complex issues involved.
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 GIG 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.
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.
Rae, who lives in Scotland, is a representative from PID UK. She retired in 2012 following a rewarding and challenging career in the NHS working with those affected by mental health issues. She has been actively involved with the Charity sector for over 25 years and continues to participate with a variety of organisations. She is committed to the care and wellbeing of all people with Genetic disorders. She hopes her experience gained working in the NHS and other charitable organisations can be put to good use working with Genetic Alliance UK.
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.
Dr Marita Pohlschmidt
Marita Pohlschmidt is the Director of Research at the Muscular Dystrophy Campaign. She is in charge of an annual £1m research budget invested to increase understanding of muscle function and muscle disease and to ensure an efficient bench-to-bedside transition of promising technology. In her role, Marita is close to affected individuals and their families with a range of muscular dystrophies and related neuromuscular conditions and understands their “sense of urgency” to find treatments.
She believes that research is now entering an exciting phase and that it is vital that patient organisations work together with the scientific community to have an input in the prioritisation and development of therapeutic approaches. She brings her experience in research and patient involvement to the board.
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 has also been 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 currently 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.
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.
Corinna Alberg has been a Project Manager at the PHG Foundation for the past 7 years. Previously she worked at Manchester University as a Research Associate on mental health risk assessment, at the North West Regional Health Authority managing strategic developments in primary health care and in health promotion in Manchester.
While at the PHG Foundation, she managed a review of services for inherited cardiovascular disease, contributed to a review of genetic ophthalmology services and of the national screening programme for Tay Sachs Disease. Currently she is part of the PHG Foundation’s team developing a Toolkit for use primarily in low and middle income countries to enable the development of services for those with congenital disorders. She is also working on a project drawing up recommendations to address the ethical, legal and social issues arising as whole genome sequencing and other next generation sequencing technologies are introduced into health services.
Dr Fiona Hemsley
Fiona works at InsuranceWith and offers her skills and experience to the board as an Observer. Fiona is a professional insurance broker with over 20 years experience. She is also a patient with a pre-existing medical condition and has experienced the difficulties which many patients with genetic conditions face when trying to access insurance. She brings her experience from both backgrounds to the board to inform our policy and project work.
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 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 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 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 [caused by mutations in the PSEN1, PSEN2 or APP genes or APP duplications] and Frontotemporal dementia [caused by mutations in the tau, progranulin or C9ORF72 genes] 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.