As Policy and Engagement Manager for Scotland, I represent Scottish patients on a number of policy making groups, run our virtual patient panel and support patients wishing to start a support group for their condition through our Helping Patients Project. I studied Law and Politics before working on placement at the Scottish Government, developing adult support and protection legislation. I also worked for several years with families with long term health conditions. I am passionate about finding out what really matters to patients and their families and the best part of my job is seeing what a difference can be made when patients have a say in our their healthcare is delivered.
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.