Our Team and Trustees

I joined Genetic Alliance UK in April 2017. As CEO it’s my role to develop strategy together with trustees and staff and to oversee our business support functions – including finance, fundraising and governance. I also provide oversight of our policy and public affairs work, member and public engagement, support services and research. I have a long-standing interest in genetics, dating back to my university studies and subsequent postdoctoral research. I’ve also worked in genetics policy at the Department of Health and immediately prior to joining Genetic Alliance UK I served for 5 years as CEO of the Tuberous Sclerosis Association – one of our member charities. The work of the Genetic Alliance UK continues to have such an enormously beneficial and sustained impact – supporting, campaigning, uniting. The incredible achievements of our member organisations and the communities they serve are inspirational and I feel that it is a real privilege to be part of the genetics and rare disease community and to be a part of the Genetic Alliance UK team.

I lead our policy work and manage the policy and public affairs team, as we work to improve outcomes for everyone affected by genetic, rare and undiagnosed conditions, through evidence-based influencing and campaigning. We have long-standing focuses on access to therapies for rare conditions, genomic medicine and the continued implementation of the UK Strategy for Rare Diseases. Our approach has always been to work collaboratively and creatively with statutory organisations and policy makers, balancing ambition with pragmatism. It is important to the team that our members have a say in the policy work that we do; we work closely with our communications team to achieve this. We retain our traditional interest in sometimes controversial issues that affect our members, including animal research, research involving human embryos, reproductive choice in the context of rare conditions, preimplantation genetic diagnosis, mitochondrial replacement therapy, and gene and cell therapy.

As the Policy and Public Affairs officer my role is to support Genetic Alliance UK’s public affairs work and assist the policy team with their ongoing projects. This includes the ‘Resetting the Model’ project which aims to improve access to medicines across the UK. I come from a scientific background with a MSci degree in Natural Sciences which includes a major in Biochemistry and a minor in Chemistry. I also have some prior experience of working within the pharmaceutical industry, specifically in clinical trial operations.

I manage the activities of Rare Disease UK, a multi-stakeholder campaign that provides a united voice for the rare disease community, launched by Genetic Alliance UK in 2008. My work spans public affairs, policy, campaigns and communications. This includes overseeing activities to mark international Rare Disease Day in the UK, campaigning for UK-wide policy to meet the needs of people affected by rare diseases, and running the Patient Empowerment Group (a collective of expert patient representatives). I also provide the secretariat to the All Party Parliamentary Group on Rare Genetic and Undiagnosed Conditions.

Prior to working at Genetic Alliance UK, I worked for a poverty relief charity as their Policy and Public Affairs Officer. I also have experience working for Amnesty International and in Parliament. I have a degree in Politics and a Masters in International Relations.

As Policy and Engagement Manager 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.

As the Director of Support my role is to develop, implement and manage projects that work directly with patients and families affected by genetic, rare and undiagnosed conditions. I started working at Genetic Alliance UK in 2011 to establish SWAN UK (syndromes without a name), our support network for families of children and young adults affected by undiagnosed genetic conditions. As an ambassador for SWAN UK, I still coordinate the network’s activities at a national level and with Nick Meade, our Director of Policy, have initiated the SWAN Europe alliance to promote the issues affecting undiagnosed families at a European level. More recently I have been managing our Building Rare Communities project to support the creation of new support groups and develop and strengthen existing small groups, as well as overseeing the pilot of our new Rare Resources.  I have a Masters in Anthropology and Development Studies and have previously worked for other disability charities such as Kids and Centre 404. I have a particular interest in developing and providing opportunities for patients, families and parent carers to have an active and informed voice in decisions and processes that affect them.

As Communications Manager for Genetic Alliance UK, I manage the charity’s communications which include our campaign, Rare Disease UK, and our support network, SWAN UK. My role includes building relationships with external stakeholders including media, charitable organisations and healthcare professionals. I help make families and professionals aware of opportunities they can get involved in and new developments which affect the genetic, rare and undiagnosed community. I have a background in journalism, marketing and events and am passionate about giving people a platform to tell their stories.

As Support and Engagement Officer for SWAN UK, my job is to provide information and support to the SWAN UK community while using our communication channels to raise awareness of the work we do to help children, young adults and families affected by undiagnosed genetic conditions. I contribute towards organising and coordinating SWAN UK events and work closely with our Parent Reps to help them run their SWAN UK local networks. I have a Master’s degree in Anthropology, and my academic background focuses on human reproductive behaviours within different social contexts.

As Director of Research, 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.

My role is to support the SWAN UK team in all their office-based work and to manage the registration of new members. My background is editorial work in trade publishing but I subsequently became involved in the charity world and worked for a national learning disability charity before I came to Genetic Alliance UK. I am particularly interested in the impact that raising a child with an undiagnosed genetic condition has on the family as a whole, and in finding ways to support parents and siblings in that position.

In my role as Senior Researcher, I work closely with patients and families to improve our understanding about what it is like to live with a rare and/or genetic condition. My main focus is conducting research with University College London for the NIHR funded CONCORD Study, which aims to improve how care is coordinated for those affected by rare conditions. I have completed a PhD, exploring the identities of parents who have a child with an undiagnosed genetic condition. I am passionate about bridging the gap between research, policy and practice in this field – so that the findings from our research studies are relevant and useful to our patient communities.

My job is to bring to public and political attention the needs of the community affected by rare, genetic and undiagnosed conditions. I have spent three decades working in the media, mostly as a broadcast and print journalist. Latterly, I have worked as a press specialist for the third sector. Like many of my colleagues, I come from the community represented by Genetic Alliance UK and use my professional and personal experience to make us heard and visible.

As Fundraising Manager, my role is to secure the funding needed for Genetic Alliance UK to operate and grow to make the biggest possible impact. My responsibilities include developing and maintaining positive relationships with our industry partners, developing the right fundraising messaging and cases for support for different projects, and overseeing funrdaising activities in local communities and from Trusts & Foundations. I have an MBA and Master’s degree in International Management and Intercultural Communication, and before joining Genetic Alliance UK I worked for DKMS, an international blood cancer charity, supporting local fundraising departments in various countries and managing international fundraising projects.

I joined Genetic Alliance UK in April 2018 as Trust Fundraising Officer, previously I held a similar position at one of our member organisations – the Tuberous Sclerosis Association. As part of the fundraising team my work involves contributing to the continuing success of Genetic Alliance UK by making funding applications to trusts, foundations and other funders such as the Big Lottery Fund. I am the father of a daughter who has a rare disease – Tuberous Sclerosis Complex – this has been my motivation in trying to improve the lives of patients affected by rare and/or genetic conditions. I have a background in fundraising for various disability support organisations both nationally and regionally.