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Drug Repurposing for Rare Diseases Conference 2019
27th February at 10:00 am - 5:00 pm
Findacure’s Drug Repurposing for Rare Diseases Conference is returning for its sixth consecutive year!
Developing drugs for rare diseases is challenging, both due to limited knowledge and small patient populations. Where treatments do exist, they often come with high price tags which healthcare providers struggle to pay for.
Our annual conference discusses the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. Held in celebration of Rare Disease Day, our event will unite the rare disease community to showcase innovative and groundbreaking drug repurposing projects that can bring real change to those living with rare diseases.
The conference, taking place on 27th February 2019 at the Royal College of Nursing, is open to anyone with an interest in rare diseases and lunch and refreshments will be provided.
10:05 The future of drug repurposing
– Dr Rick Thompson, CEO, Findacure
10:20 The UK’s first drug trial for Rett syndrome / Hopes, fears and a few tears! One family’s experience
– Rachael Bloom Stevenson, Executive Director, Reverse Rett & Becky Jenner, CEO, Rett UK
11:00 Tea break
11:30 Repurposing nitisinone in Alkaptonuria: a collaborative effort
– Prof. Lakshminarayan Ranganath, Medical Director & Co-founder, AKU Society
12:00 Pleotherapy: a new approach to drug discovery
– Xavier Paoli, VP, Chief Commerical Officer & Rodolphe Hajj, Chief Pharmacology Officer, Pharnext
12:30 Prizes for ‘The Student Voice’ essay competition
13:40 Repurposing to improve surgical outcomes in craniosynostosis
– Dr Dagan Jenkins, Lecturer, UCL Great Ormond Street Institute of Child Health
14:10 Incentivising generics manufacturers to repurpose off-patent medicines
– Paul Fleming, Technical Director, BGMA
14:40 Tea break
15:10 Lightning talk session
Increasing the efficiency and success of drug repurposing: utilisation of multiple compound studies in rare diseases
Joanna Segieth, Director, Biosynetix
Patient centricity in action – the use of mobile research nurses in DMD trials
Helen Springford, Vice President of Strategic Development, Illingworth Research
The BATcure family survey
Heather Band, Scientific Officer, BDFA
Drug repurposing: taking practical steps beyond a clinical programme
Gavin Jones, Director of Rare Disease, Open Health
Elsevier data science platform for drug repurposing
Finlay MacLean, Data Scientist, Entellect Elsevier
Idebenone: how repurposing this drug is helping Duchenne muscular dystrophy
Janet Bloor, Parent & Catherine Lawrence, Senior Medical Advisor UK, Santhera
15:50 A life with PNH; from isolation to treatment
– Suzanne Morris, Patient Representative
16:20 Panel Session
17:00 Drinks reception and networking
Free tickets are available for carers of paid and registered delegates.
For any questions, please contact [email protected].
With thanks to our sponsors
We would like to thank our sponsors for providing financial support for this event. This event has been solely organised by Findacure and our sponsors have not determined the content or organisation. All funds received by pharmaceutical companies have been used in accordance with the ABPI code. Please note, sponsorship does not equate to endorsement of any products or services.
Sponsorship opportunities for our conference are available. Please contact our Events Manager, Mary Rose Roberts, for details.