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.
Gloria Clark currently works as a Project Manager for the Patients Association, running projects for healthcare organisations directed at involving patients and improving care. She was formerly the elected Lead Governor at her local hospital trust and is a trustee at Headway Somerset, which supports people affected by acquired brain injury. She chairs the boards of three grant-giving charities and has held managerial positions in commercial organisations and the Citizens Advice Bureau. Gloria has a family member with Tuberous Sclerosis Complex and has been a member of the Tuberous Sclerosis Association for 10 years. This experience has given her a strong understanding of the issues affecting those with a rare genetic condition.
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.
Sara Hunt is the CEO and founder of ALD Life, a charity supporting sufferers of the rare and terminal genetic brain disorder adrenoleukodystrophy (ALD). Both of Sara’s sons were diagnosed with ALD in 2001. After failing to find adequate support, and with the encouragement of other ALD parents, Sara founded ALD Life in 2004. Following the death of Sara’s eldest son in 2012, Sara stepped down as Chair of ALD Life to be employed as its CEO. Since then she has been proactive in gaining management skills, and passed a Level 3 NVQ Certificate in Management in 2014. She also graduated successfully from the EUPATI (European Patients’ Academy) course to educate patient advocates in aspects of drug development and research in 2016. In addition she has developed a profitable business to support ALD Life’s core costs. Currently ALD Life employs a total of 20 staff – three of whom are directly affected by adrenoleukodystrophy. Sara is a member of the NHS Metabolic Clinical Reference Group as a patient voice representative. She also represents ALD Life as a member of Patient Advocates for New Born Screening (PANS), Specialised Healthcare Alliance and EURORDIS.
Sue Millman has spent her career in the voluntary sector. Initially Sue worked with people who were homeless or needing support in their housing situation, including refugees, ex-offenders, Gypsies and travellers, and people with substance misuse problems. She provided and co-ordinated support, and managed their accommodation. Sue became CEO of a youth homeless charity, Capital Housing Project; and then CEO of Alcohol Recovery Project, a housing association also providing day services across London. 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 co-ordination for which there are no treatments and cures; there are around 12,000 people with ataxia in the UK. Over the last 10 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 5 years as Vice Chair. Sue joined the NHS England Specialised Services Patient and Public Voices Assurance Group in 2012, and has recently joined the NHSE Rare Disease Advisory Group.
Elizabeth (Liz) Porterfield is secondary carer for her son who has Huntington’s Disease. Liz recently retired from her role as Head, Strategic Planning and Clinical Priorities, with the Scottish Government Health & Social Care Directorates. Liz led the development of several clinical strategies including the National Clinical Strategy, the Cancer Strategy and the Scottish Rare Disease Plan, “It’s Not Rare to have a Rare Disease”. 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. Elizabeth contributed to the establishment of the Innovative Healthcare Delivery Programme (IHDP) based at the Farr Institute in Edinburgh and the Scottish Genomes Partnership.
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, 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.
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 form 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.
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 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.