PCD Research was founded and Registered in England by the Charity Commission UK in January 2022 (1197528).
Dr Harriet Holme founded PCD Research, the first charity world wide to fund scientific research for Primary Ciliary Dyskinesia, with the aim of disease modification and ultimately a cure. The majority of research in the UK, particularly in rare disease, is funded by charities.
Our Vision
A world where primary ciliary dyskinesia (PCD) is cured.
Dynamic
The research world is constantly moving, and so are we, supporting innovative research and advocating for patients.
Our Mission
To raise awareness about inherited ciliopathies.
To improve the lives and outcome for people with PCD by advocating for an effective care regimen together with therapies.
To fund and support scientific research to understand inherited ciliary dysfunction.
To provide patient voice to ensure that research and therapeutics reflect lived experiences of people with PCD.
To create a world where being born with PCD no longer means carrying a lifelong burden of disease. Instead, people living with PCD will be able to look forward to a long and healthy life.
Pioneering and Knowledgable
World leading scientific and medical experts ensure that pioneering research is funded.
Trustees
Founder and Chair
Dr Harriet Holme MA MBBS MRCPCH(2009) PhD
After reading medicine at Cambridge University, Harriet worked in the NHS as a National Institute of Health Research (NIHR) academic paediatrician in London for nearly a decade, ultimately specialising in paediatric oncology. Harriet completed her PhD on cancer drivers and potential novel therapeutic targets in osteosarcoma at University College London and the Institute of Cancer Research, in Professor Alan Ashworth’s laboratory. This included investigation of synthetic lethality using siRNA screening of the kinome and creation of models of loss of function using gene editing (CRISPR-Cas9).
Harriet currently works as a Drug Development Clinician for Weatherden, assisting biotechs with strategy and clinical trial design in oncology and advanced therapeutics. Through experience in Harriet’s career, she understands the route from bench to clinic for the development of novel therapies. Harriet is passionate about improving the outcomes for people with PCD, and ensuring access to proportionate, evidence based effective treatments.
Harriet is the parent of a child with PCD.
Gurhan Erturan MBBS MA LLB, Trustee
Gurhan is currently the Medical Director and global lead for Medical Affairs for Orthofix-SeaSpine. Gurhan worked for sixteen years in the NHS as a trauma and orthopaedic surgeon. He has a research fellowship and postgraduate science degree from the University of Oxford, together with a Law degree. Gurhan has a decade of commercial and clinical consulting in the life sciences and health-tech sectors. He advises predominantly in orthopaedic, musculoskeletal trauma, biologics, surgery enabling technologies, and spinal devices.
Gurhan is the parent of a child with PCD.
Natalie Gehl MSc
Natalie is passionate about helping children to thrive, having worked voluntarily in the education setting, and as the mother of two young children. She has been delighted to continue the prestigious significant fundraising history of her family, personally raising over half a million pounds for medical research and treatment. Natalie understands the immense value of improving patient outcome.
Florence Barkats, BSc, MBA
Florence Barkats is a seasoned operational and strategic leader with over 22 years of experience in the life sciences and technology sectors. She is passionate about bringing equality of access to care and helping support people living with an orphan disease. As a senior leader in a life science tech company, Florence oversees strategy development and growth for a pioneering SaaS platform in real-world data (RWD) and evidence. Florence has a proven track record of leading complex projects and organisations, from steering digital transformation initiatives across NHS Trusts to overseeing regulatory compliance and clinical trials for novel medical technologies. She brings strategic thinking, risk and financial management experience to the Charity. She is a volunteer for the West London Mission and has served as a lay member on the NHS Mental Health Taskforce to increase equality of access.