The CRDN Team

OUR TEAM

Jo BALFOUR

Operations Manager

Read about Jo...

Jo is a founding member of CRDN and is a steering group member. Jo manages the overall operations of the charity including the events programme – RAREfest and RAREsummits, networking and educational events and is founder of the CRDN Unique Feet activity and community support group for children and their families living locally with rare conditions. Jo also supports the organisation of CRDN’s fundraising events.

Jo has 25 years experience in secondary teaching specialising in the field of special educational needs and children in care. An advisory teacher for Cambridgeshire’s Virtual School for Looked After Children for 13 years, she supported and challenged schools to provide the best care and be aspirational for marginalised and vulnerable young people with exceptional circumstances. She uses her prior experience as a SENCO and knowledge of SEND best practices and processes to support and advise families living locally with rare and undiagnosed conditions.

LINDSEY BROWN

Event Consultant

SUZANNE MORRIS

Graphic Designer

OUR Board of Trustees

Our trustees include some of the UK’s foremost experts in rare diseases and our founding members come from diverse backgrounds in academia, business, healthcare, education and patient support networks.

PROF. ALAN BARRELL

Trustee

Read about Alan...
Alan has spent his working life in or close to healthcare – both as technical practitioner in the NHS for six years in Clinical Laboratory Medicine, and more than twenty years in the Healthcare Industry – seventeen in senior executive positions with Baxter Healthcare International. From his Cambridge base, he is active worldwide working in education, business support and start-up – mostly related to health and life sciences.

He has raised venture capital funds for investment in early stage healthcare companies and served on the boards of a number – still doing so today with Eagle Genomics Ltd, Epigene Prognostics, Lifebit Bioinformatics, MedTech International, and advises Nuclera, a Cambridge start-up working on the development of long form DNA.

As Treasurer and Trustee of the Royal Society of Arts Alan gained experience in charity direction and management. He was for eight years a Trustee of the Papworth Disability Trust and is a Trustee of the newly formed charity OCD Research Initiative (working on Obsessive Compulsive Disorder). In the latter part of his career, back in the NHS, Alan was the first Chairman of Health Enterprise East and Chairman of the East of England NHS Innovation Council.

Alan was awarded the Queens Award for Enterprise Promotion in 2005 and appointed Knight First Class of the Order of the White Rose of Finland in 2010 for services to education. He is an Honorary Fellow of Anglia Ruskin and Essex Universities. He works extensively in China and Finland – as well as UK – in promoting the development of life science companies and cross border investments and has a special interest in the rare diseases area.

DR. TIM GUILLIAMS

Trustee

Read about Tim...
Tim is a social entrepreneur passionate about delivering the next generation of therapeutics to rare disease patients in need. He is the Founder and Chief Executive of Healx and the Co-Founder and Chair of the Cambridge Rare Disease Network (CRDN), a charity aiming to foster dialogue and awareness around rare diseases in Cambridge, UK.

Prior to Healx and CRDN, Tim worked on University-Industry interactions in the area of Life Sciences for the UK Government Department for Business, Innovation and Skills (BIS). He obtained his PhD in the field of Biophysical Neuroscience at the University of Cambridge. He is also a Junior Associate Fellow of the Centre for Science and Policy (CSaP). Before moving to Cambridge, he obtained an MEng in Bio-Engineering from the University of Brussels (VUB).

Tim’s research interests are in the biochemical genetics of rare inborn errors of metabolism, latterly with special reference to lysosomal diseases: he has authored numerous original articles including reviews and research publications. Recently he has conducted therapeutic research in gene transfer as well as clinical trials leading to the global approval of two therapies for Gaucher disease, an ultra-rare disorder. An Internist and Metabolic Physician, he is an Editor and author of The Oxford Textbook of Medicine, of which the 6th Edition is in late-stage preparation.

DR. Gemma Chandratillake

Trustee

Read about Gemma...
Gemma is Education and Training Lead in genetics for the East of England. She is trained as a molecular geneticist and genetic counsellor. She has a long-standing interest in rare genetic diseases, having used both fruit flies and worms to model alpha-1-antitrypsin deficiency and Niemann-Pick type C disease in the lab. In Feb 2012, Gemma joined the Stanford University spinout company Personalis, Inc., and developed a clinical genomic sequencing test for the diagnosis of individuals with rare disease.

Since moving back to the UK, Gemma has focused on healthcare professional education in genetics, and coordinates the Masters course in Genomic Medicine at the University of Cambridge. At CRDN she is interested in working with stakeholders (clinical, academic, industry, and families) to find creative ways to mainstream genomics within the NHS for the benefit of patients with rare disease.

Dr. JONATHAN MILNER

Trustee

Read about Jonathan...
Jonathan, co-Founder and currently Deputy Chairman of Abcam plc, is an entrepreneur and investor and is passionate about supporting UK life science and high-tech start-ups. He has provided considerable investment and support to over 40 companies and has assisted three technology companies to IPO on the London AIM Stock exchange.

Jonathan gained his doctorate in Molecular Genetics at Leicester University after graduating in Applied Biology at Bath. From 1992–95, he was a post-doctoral researcher at Bath, following which he worked at the University of Cambridge in the lab of Professor Tony Kouzarides researching the molecular basis of breast cancer. He identified the market opportunity for supplying high-quality antibodies to support protein interaction studies, and in 1998, founded Abcam with David Cleevely and Professor Tony Kouzarides.

Jonathan is also Chairman of Axol Bioscience, Cambridge Allergy Therapy, and PhoreMost; and a non-executive director of Repositive, Elpis, HealX and Syndicate Room.

In 2015 Jonathan, with Professor Tony Kouzarides, co-founded the Milner Therapeutics Institute at the University of Cambridge. Also in 2015 he co-founded, with Professor Laurence Hurst, the Milner Institute for Evolution at the University of Bath.

DR. SARAH LEITER

Trustee

Read about Sarah...
Sarah was born and raised in Germany before moving to the UK to pursue a long-held ambition to study medicine. During her undergraduate training at the University of Cambridge she undertook a number of research projects and decided to do a PhD to further her passion for understanding the basic science underlying medical practice. She did her research under the guidance of Dr Robert Semple investigating rare syndromes of low blood sugar in infants.
Together with her personal experience of living with a rare condition, Sarah’s research has highlighted the impact that research and good clinical care can have on patients. Sarah is now a Junior Doctor at Addenbrookes Hospital in Cambridge.

PROF. TIM COX

Trustee

Read about Tim...
Timothy M. Cox FMedSci, Professor of Medicine Emeritus and Director of Research, was elected to the Chair of Medicine in the University of Cambridge in 1988, and is a Life Fellow of Sidney Sussex College. Currently directing a laboratory research in the University Department of Medicine and Honorary Consultant Physician at Addenbrooke’s NHS Trust Hospitals, he was the Founding Director of the MB/PhD programme in Cambridge (1989-2014) – the first the UK.

After Oundle School, and technical work in Cambridge, he was Entrance Scholar in Science at The London Hospital Medical College and later awarded the Anderson Prize in Clinical Medicine and Pathology. In London’s East End, he took up a two-year Junior Lectureship in Pathology with Professor Israel Doniach in the Bernard Baron Institute before returning to clinical training posts at the Royal Postgraduate Medical School, Hammersmith, London, and the Oxford United Hospitals. Subsequently awarded a Medical Research Council Training Fellowship, Wellcome Trust Senior Fellowship in Clinical Science and Wellcome Trust Senior Lecturer Cox was appointed Senior Lecturer in Haematology and Medicine at the University of London at Hammersmith (now Imperial College of Medicine). He was a Visiting Scientist in the Department of Biology, Massachusetts Institute of Technology, USA; and in 1986, he spent six months in the Sir William Dunn School of Pathology, Oxford.

Tim’s research interests are in the biochemical genetics of rare inborn errors of metabolism, latterly with special reference to lysosomal diseases: he has authored numerous original articles including reviews and research publications. Recently he has conducted therapeutic research in gene transfer as well as clinical trials leading to the global approval of two therapies for Gaucher disease, an ultra-rare disorder. An Internist and Metabolic Physician, he is an Editor and author of The Oxford Textbook of Medicine, of which the 6th Edition is in late-stage preparation.

Dr. RON JORTNER

Trustee

Read about Ron...
Dr. Ron Jortner (AKA Roni) is a scientist and entrepreneur currently based in Cambridge, UK. He is founder and managing director of Masthead Biosciences, providing the biomedical and life-sciences communities with professional assessment and research on new treatments, medical technologies, and diagnostics.

Prior to founding Masthead Biosciences, Ron held several research positions in neuroscience and brain imaging, including at the MRC Laboratory for Molecular Biology (LMB) in Cambridge, and at several Max Planck Institutes in Germany. His work, always combining biology, computation, and systems engineering, focused on mechanisms of memory formation, behavior in virtual environments, and neural processing of odours.

Ron did his Ph.D in computational neuroscience at Caltech and the Hebrew University, and completed his B.Sc. in biology (Magna cum laude) at the Hebrew University. He enjoys rock climbing, martial arts, music, and improvisation theatre.

SUE BERRY

Trustee

Read about Sue...
Sue is a rare diease parent. Her daughter, Charlotte has Coffin Sirius Syndrome. Sue’s involvement with CRDN includes speaking at the first RAREsummit and Charlotte was part of the Unique Feet dance troupe that performed at RAREfest19.
Sue and her family live in Willingham, Cambridge for over 20 years. Before that Sue lived in various parts of the UK and Far East. Sue has a degree in Colour Chemisty from Leeds University and worked in the textile indutry in the UK and Far East in Fabirc development / product development. Since 2001 Sue has worked for R&D at Molton Brown, working on packaging and product development, liaising between supplier, internal marketing teams and product development teams to develop new products and packaging. She has been a been a senior manager for the last 3 years and manage a team of 7.

If you’d like to know more about Cambridge Rare Disease Network, or if you have any questions about our activities or partnerships, please contact us:

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