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Mary Rose Roberts

January 2019

The everyday impact of rare diseases: supporting your patient community

17th January at 10:00 am - 4:00 pm
Hamilton House, Mabledon Place
London, WC1H 9AZ
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[Image description: Photograph of someone talking with their arms stretched as though emphasising how big something is.]

Findacure is delighted to announce its first training workshop of 2019, which will focus on how patient groups can help support their patient communities through the everyday impact of living with a rare condition. 10:00   Registration 10:30   Welcome 10:40   Contact: how we support families with rare conditions         - Rachel Gibson, Rare Conditions Officer, Contact 11:25   Discussion session: how can patient organisations help their community access services 12:15   Lunch 13:15   Encouraging self-management in young people with haemophilia   …

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February 2019

Drug Repurposing for Rare Diseases Conference 2019

27th February at 10:00 am - 5:00 pm
Royal College of Nursing, 20 Cavendish Square
London, W1G 0RN
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[Photograph of three men standing in a line facing the camera. The men are all smartly dressed in suits. They are each holding a sign which reads "I support Rare Disease Day Because...."]

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…

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