Our 2018 Cambridge Rare Disease Showcase is fast approaching and the anticipation is building over at Findacure HQ. In this week’s blog, we thought we’d give you an exciting look at some of our lightning talk speakers, and a quick insight into what they’ll be sharing on the evening.
Laurence Woolard – Director, On The Pulse Consultancy
Laurence is the Founder and Director of On The Pulse, a consultancy which provides expert patient insight and strategic guidance to UK healthcare providers, to enhance the patient and carer experience of those affected by haemophilia. Haemophilia is a rare genetic bleeding disorder, which prevents blood from clotting normally. The condition primarily affects boys and has two main forms – haemophilia A, which affects one in 10,000 males, and haemophilia B, affecting one in 50,000 males. Haemophilia requires life-long self-care, but many young people lack the necessary skills to successfully manage their condition, which can lead to major bleeds and long-term complications.
Currently, the UK has no formalised programmes in place to address this, but over the past year, On The Pulse have been working on a new initiative – a peer-led approach to sharing expertise and support, to encourage self-management in young people with haemophilia, allow them to make well-informed decisions about treatment options and care, and, ultimately, improve their transition to adulthood.
Dr V Ramesh Bulusu – Consultant Oncologist & Associate Lecturer, Cambridge University
Dr Bulusu is the Founder and Chairman of the Cambridge Gastrointestinal Stromal Tumour (GIST) Study Group and the national lead consultant for the PAWS-GIST consortium (paediatric, adolescent, wild-type and syndromic GISTs). GISTs are very rare cancers that affect approximately 15 people in every million. PAWS-GISTs are even rarer, affecting only 10% of GIST patients – mostly young adults – and currently, there is no effective treatment or cure.
The PAWS-GIST consortium and affiliated clinic is Europe’s first for rare cancers, and is based out of Addenbrooke’s Hospital in Cambridge. The consortium’s mission is to raise awareness, improve treatment, stimulate research and, ultimately, find a cure for PAWS-GIST patients. In his talk, Dr Bulusu’s will summarise the progress they have made over the past four years and their vision for the future.
18:30 – Registration
19:00 – Welcome and introduction to Findacure
From this point onwards, the evening will consist of open networking, complemented by six delegate proposed five-minute lightning talks. Canapés and refreshments will also be served.
19:10 – UK PAWS GIST Clinic: collaboration between patients, carers and healthcare professionals
Dr Venkata Ramesh Bulusu Lead Clinician, UK PAWS GIST Clinic, Cambridge University Hospitals
19:30 – Market access challenges in rare diseases
Robert Whitemore Director, Roboleo & Co
19:50 – Finding genetic interactions with therapeutic potential in rare disease
Ramsay Bowden Clinical Research Fellow, Steve Jackson Laboratory, Gurdon Institute, University of Cambridge
20:10 – Exploring a peer-led approach to encouraging self-management in young people living with haemophilia
Laurence Woollard Director, On The Pulse Consultancy
20:30 – Dyskeratosis congenita – time for DC Action
Hilary Longhurst Medical Adviser, DC Action
20:55 – Closing remarks
21:00 – End of showcase
Tickets for The Cambridge Rare Disease Showcase are still available, and attendance is free for patients, patient groups and charities.