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.
Claire Jeffries, Executive Director
Claire has personal family experience of CGD and so has a good understanding of what life is like living with the condition. As Executive Director, Claire plays a strategic role in achieving our charities objectives agreed by our board of trustees. Claire is our only full time member of staff.
Claire started working with the charity in January 2018 as our Charity Coordinator and has successfully taken the charity forward in a new positive direction. Claire is the first point of contact for our members and continues to provide advice and support to many families and individuals living with CGD.
Niamh Carmichael, Community Fundraising and Marketing Officer
Niamh enjoys working with the CGD community and wider public to raise money for CGD Society and helping them have fun whilst doing so. She also works to raise awareness and strengthen connections with the community and potential supporters through our social media channels.
Niamh joined the CGD Society team in May 2022, alongside her other part-time communications and community fundraising role at Home-Start Watford & Three Rivers, another charity supporting families in difficult situations. Her Sociology degree, as well as various children and welfare-related volunteering roles over the years, means she’s passionate about empowering individuals and families to thrive and have access to the support they deserve, and she is loving helping the CGD Society to do so.
Helen Braggins, CGD Society Clinical Nurse Specialist
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.
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