Programme

Jo is a founding member and Managing Director of CamRARE. She is the creative director and master of perfect delivery behind CRDN’s innovative, patient-centric events programme: RAREfest; RAREsummit; networking forums and educational events. 

Jo is the founder of CRDN’s Unique Feet, a regional community support group for families affected by rare conditions. She gives strategic guidance and direction to the board and oversees the charity’s operations.

From a background in Special Educational Needs Management and as an advisor for Looked After Children in schools, Jo’s 25-year career in education has been one which has offered support and challenge to schools to provide the best care for young people living in exceptional circumstances to enable them to achieve aspirational goals in all aspects of their lives.

She has continued this ethos of support and challenge in her work in rare diseases, aspiring to a world where all those affected by rare diseases receive exceptional diagnosis, care, treatment and support.

CRDN: https://www.camraredisease.org/

Dr Debbie Nixon is Head of Health Policy at Costello Medical. Debbie leads her team in the delivery of a diverse range of health policy projects designed to raise awareness of unmet needs, enhance quality of care for patients, and provide practical solutions for policymakers and healthcare professionals.

Each project is unique, and enables Debbie and her team to work closely with different stakeholder groups to develop evidence-based communications across a wide variety of topics, including the unique challenges of rare diseases. 

Prior to joining Costello Medical, Debbie worked as a post-doctoral researcher at the University of Cambridge. Debbie holds a BSc (Hons) in Pharmacology, a DPhil in Neurobiology, and a Postgraduate Diploma in Health Policy.

Costello Medical: https://www.costellomedical.com/

Emma Kinloch is the founder of Salivary Gland Cancer UK.  She is an experienced patient advocate focussed on collaboration, co-production and ensuring the patient/public voice is fully integrated into cancer research from strategy and priority setting, through delivery, to output, evaluation and dissemination.

Having joined the National Cancer Research Institute in 2014 on their Head and Neck Group, she is now their Consumer Lead, Chairs the Consumer Forum and sits on the Strategy Advisory Group.  In addition, Emma holds a number of positions in the UK on funding committees, strategy groups and Trial Management Groups with various institutions.  At a European level she acts as a Patient Advisory Group member to the EURACAN rare head and neck cancer domain.

Emma has over two decades of experience in finance.  Specifically, asset management, and has worked in both the UK and Asia, covering all products.  Her most recent position is focussed on the governance of the UK and European regulated businesses.

Emma studied Experimental Psychology at Corpus Christi Oxford, holds an MSc in Criminology and Masters in Organisational Psychology.  She is currently studying for a Professional Doctorate in Occupational Health, Psychology and Management at the University of London.

Natasha joined the BioResource after completing a PhD at the University of Cambridge where she studied the molecular biology of the endometrium, the lining of the womb, and endometriosis, a condition that affects 1 in 10 women in the UK. Natasha now leads the team that is undertaking exciting new research on RNA phenotyping of Rare Diseases with the aim of assisting in diagnosis, improving our understanding of disease mechanisms and supporting the potential discovery of new treatments.

Dr. Ron Jortner is a scientist and entrepreneur based in Cambridge, UK. He is Founder/CEO of Aspire Biosciences, which seeks new treatments for rare diseases, and Managing Director of Masthead Biosciences, which evaluates treatments and technology in biomedicine.

Ron has been serving the rare disease community for years, working closely with patient groups, industry leaders, clinicians, and scientists. He has advised on technology, trial design, data analysis, and regularly supports international rare disease families in accessing expert centers and research in their quest for diagnosis and treatment. He served as a trustee of the Cambridge Rare Disease Network, and led the charity’s Companies Forum. Recently, as member of the Action for Rare Disease Empowerment (ARDent) taskforce, he was instrumental in examining the impact of the COVID19 pandemic on rare disease clinical trials.

Previously, Ron held scientific positions at the MRC Laboratory for Molecular Biology, the Max Planck Society, and other elite scientific institutions worldwide; his research always combining biology, computational modeling, and technology. Ron completed his Ph.D. in computational neuroscience at the Hebrew University and Caltech, and his B.Sc. (Magna cum laude) at the Hebrew University.

He enjoys rock climbing, martial arts, music, and improvisation theater.

Dr Hannah McInnes-Dean works for the charity Antenatal Results and Choices, or ARC for short. She is ARC’s research associate and also works on the ARC helpline supporting parents going through screening or diagnosis in pregnancy. Her background is in social research and she is currently working with a team of researchers at Great Ormond Street and UCL on the EXPRESS study. As part on this research, she is interviewing parents to understand their views and experiences of a new prenatal test being offered by the NHS.

Kym Winter is a psychotherapist who has been counselling couples and individuals impacted by rare conditions since 2013. In 2020, she founded RaremindsCIC (a non-profit organisation based in the UK) to support and address the mental health needs of the rare disease community. Rareminds works in partnership to provide specialist online counselling, workshops and support and training for both patient communities and healthcare professionals.