EL RINCÓN DEL SOCIO
A healthy mind locked inside a frozen body. A cure is near, but we need to keep research funded to perfect it in time for those with FOP. Your role is crucial in preventing one of the world's most debilitating conditions – forever! Hope rests with people like you, people who care. Please become a FOP Friend.
Friday, 20 May, 2016 - 09:00 to Sunday, 22 May, 2016 - 18:00
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| 2016 FOP Friends, UK Conference & Family Gathering |
FOP Friends invites you to the 2016 FOP Conference and Family Gathering. The event will take place in Manchester, UK at the Radisson Blu Airport Hotel. The main event is on Saturday 21st May 2016 with pre-booked clinical appointments available with our world renowned FOP experts on Friday 20th, Saturday 21st (afternoon), andSunday 22nd.
FOP experts from around the world will be in attendance to present the latest research; advances made in the search for treatments and a cure; and updates on current and future clinical trials. We will have an introductory session to explain the science behind “What is FOP?” for non-scientists to help us all understand the processes involved and how they guide research into treatments. In addition, sessions tackling the challenges FOP families face from diagnosis, through early school life, and into adulthood, including guidance on what support can be found for those with FOP and their families. These sessions will provide an opportunity to break off into groups to discuss specific topics of interest.
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Clinical sessions will be held by Professor Fred Kaplan and Dr Robert Pignolo (University of Pennsylvania, USA), and Dr Richard Keen (Royal Stanmore Hospital, UK). Taking place over three days, these sessions will give patients the opportunity to consult with our FOP experts. Childcare and activities will be provided where possible for those with young families allowing parents to take part fully in the day. On the evening of the 21st we will host an evening meal with light entertainment.
Thanks to our generous supporters, we are pleased to offer patients, their main carer, spouse/partner and their parents and siblings (immediate family members) discounted accommodation and cost of attendance.
Event Schedule (subject to change)
| Friday 20th May |
| 09:00 – 18:00: 8 x 40 Minute clinical sessions held on the hour. * |
| 19:00 – 22:00: Informal “Meet and greet” |
| Saturday 21st May | |
| 08:30 - 09:00: Registration | |
| 09:00 – 09:20: Welcome | |
| 09:20 – 09:40: What is FOP? – The science for non-scientists | |
| 09:40 – 10:15: How do we fix FOP? | |
| Comfort break | |
| 10:45 – 11:15: How close is a treatment? | |
| 11:15 – 12:00: Managing FOP – Including Q&A with the experts | |
| Buffet Lunch | |
| 13:00 – 18:00: 5 x 40 Minute clinical sessions held on the hour. * | 13:00 – 16:45: Workshops & presentations |
| 16:45 – 17:00: How can you help? | |
| 17:00: Conference close | |
| 19:30 – 23:00: Evening dinner & entertainment | |
| Sunday 22nd May |
| 09:00 – 18:00: 8 x 40 Minute clinical sessions held on the hour. * |
* Clinicians: Professor Kaplan, Dr Pignolo, Dr Keen. Appointments made in advance.
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