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.
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.
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.
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.
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 was previously 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. Christopher 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 Genetic Alliance UK 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.
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 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 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.
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.
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 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.
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.
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 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.
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 Tracey Connelly is the CEO of Ragdolls UK. A sufferer of Turner's Syndrome she has always been passionate about helping other children who suffer from genetic disorders.
With a degree in genetics from the University of Aberdeen, Tracey now dedicates her time between her charity work and writing novels under the pen name of Vivika Widow.
Growing up with a genetic disorder, Tracey sees the work of Genetic Alliance UK as extremely important in paving the way for new understandings, treatments and support.
She hopes that her understanding as a scientist as well as a patient will make a positive contribution to the work of Genetic Alliance UK as well as the patient population.
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.