Earlier this year, Genetic Alliance UK advertised for four new trustees to join our enthusiastic and committed Board at an exciting time for the charity. We were seeking to complement the expertise of our existing trustees by recruiting people with a broad mix of skills and knowledge, and encouraged applications from people from ethnic minority backgrounds and men who are currently under-represented on the Board. We wanted to hear from candidates from all walks of life, including people with lived experience of rare and genetic conditions either directly or through a family member.
We are thrilled to announce that all four of our prospective trustees were formally appointed at our recent AGM and we would like to introduce each of them to you.
Lara Bloom 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, which commemorated ten years in the field of patient engagement and advocacy leadership. 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.
Toby Hannam 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 delivery service improvements, and 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 affected by genetic conditions and their families.
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 National Services for a number of complex disorders with colleagues from the dedicated Rare Diseases Centre at St Thomas Hospital, London. She has been the Principal Investigator in Phase III clinical trials whilst fostering effective international collaborations to help improve outcomes for patients. Following the publication of the UK Rare Disease Framework in 2021, Shehla co-chaired a national group with patient and advocates to articulate the patient voice and improve services for patients with rare disease.
Greg Stevenson has worked in the pharmaceutical industry since graduating from the University of St Andrews 30 years ago. In that time, he has focused 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.
Two years ago Greg 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, whilst continuing to work with companies from across healthcare.
Find further information on all our Trustees here.
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