In order to keep its overheads to a minimum, the CGD Society does not
employ any staff directly. Instead it collaborates with Genetic
Disorders UK to ensure that the charity is run professionally and at a
low cost base.
Caroline Harding is the chief executive of Genetic Disorders UK and the Chronic Granulomatous Disorder Society. She has an MBA from INSEAD and worked in international brand development before her first child was diagnosed with hypohidrotic ectodermal dysplasia. In 2007, Caroline joined the team managing the national Jeans for Genes Day campaign that works to raise awareness and funds for children with a genetic disorder. She is a passionate advocate for families affected by genetic conditions and has been interviewed for television, radio and the press about the challenges faced by parents with an affected child.
Susan is Head of Research and Patient Services at the CGD Society where
she has worked since 2002.
Susan is Head of Research and Patient Services at the CGD Society where she has worked since 2002.
She has a degree in biochemistry and a PhD. During her research career in osteoporosis, rheumatoid arthritis and myasthenia gravis she held several research grants, published research papers and acted as an external reviewer for grant awarding bodies and scientific journals.
At the CGD Society, Susan oversees the provision of the nursing services, develops content for the website and works with the Research Advisory Panel to identify key areas of research to fund.
Susan is a member of the following boards: The UK Genetic Testing Network Clinical and Scientific Advisory Group, the Specialised Services Clinical Reference Group for Specialised Immunology and Allergy Services and served as a member of the Executive Council of the Association of Medical Research Charities from 2009 - 2015.
Helen is a Registered Sick Children’s Nurse and a Registered General
Nurse, and works full-time as our CGD Clinical Nurse Specialist based at
Great Ormond Street Hospital for Children (GOSH) in London.
Helen is a Registered Sick Children’s Nurse and a Registered General Nurse, and works full-time as our CGD Clinical Nurse Specialist based at Great Ormond Street Hospital for Children (GOSH) in London.
She has extensive nursing experience in haematology and oncology, child protection, care of children with complex needs, specialist adolescent care and transition to adult services. Helen worked previously at University College Hospital and at St Mary’s NHS Trust where she coordinated a multi-disciplinary nursing team. Helen provides telephone and email support for those affected by CGD throughout the UK. Helen also provides on-site support for CGD patients under the care of GOSH.
Her work includes coordination of clinics for CGD, working with patients undergoing transplant and giving intravenous home therapy. She also offers pre-natal genetic advice and ante-natal support for X-linked CGD female carriers.