Meet the team

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 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 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 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 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 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.

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 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.

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 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.