2014 Conference & Family Gathering

Research & Medical Presentations, Clinical Appointments, Workshops

FOP Action invites you to the 2014 FOP Family Gathering. The event will take place in Manchester, UK at the Radisson Blu Airport Hotel.


The main event takes place on Saturday 17th May with pre-booked clinical appointments available Friday 16th, Saturday 17th (afternoon), and Sunday 18th May.

World renowned FOP experts will be in attendance, presenting the latest on FOP research, the search for treatments, a cure and the path to clinical trials.

Dr Alex Bullock
Dr Alex Bullock
Prof Fred Kaplan
Dr Bob Pignolo
Dr Bob Pignolo
Prof Eileen Shore
Prof Eileen Shore
Prof Jim Triffit
Prof Jim Triffit

Drs Kaplan and Pignolo will be holding 45 minute clinical sessions for patients. Workshops will be held with topics to be announced. Childcare and activities will be provided where possible for those with young families.


Event Schedule

Friday 16th May 09:00 – 17:00
7 x 45 Minute Clinical Sessions held on the hour.*
19:00 – 20:00 Informal “Meet and Greet”
Saturday 17th May 08:30 – 09:15: Registration & Welcome
09:15 – 09:45: Professor Jim Triffit
09:45 – 10:15: Professor Fred Kaplan
10:15 – 10:45 Comfort Break
10:45 – 11:15: Dr Alex Bullock
11:15 – 11:45: Professor Eileen Shore
11:45 – 12:15 Dr Robert Pignolo
12:15 – 13:30 Buffet Lunch
13:00 – 17:00 4 x 45 Minute Clinical Sessions held on the hour. * 13:30 – 16:00 Workshops
16:00 – 16:30 Presentation **
16:30 – 17:00 Presentation **
17:00 – 17:30 Presentation **
19:30 -23:00 Evening Dinner & Entertainment
Sunday 18th May 09:00 – 17:00
7 x 45 Minute Clinical Sessions held on the hour.*

* Clinicians: Prof. Kaplan & Dr Pignolo. Appointments made in advance and strictly 45 minutes.
** Presenters: Dr Bullock, Prof. Triffit. Prof. Kaplan, Dr Pignolo, Prof. Shore. IFOPA Research committee.

Event Registration

Friday 16th May
Clinical Appointments £ Free (Please consider a donation)
Meet and Greet £ Free
Saturday 17th May
Adult Registration (24 Hour Package)
Full day with tea and coffee breaks throughout the day, buffet lunch, presentations, workshops. Includes evening dinner, Saturday night accommodation and next day breakfast.
Adult 24 Hour Supplement (Additional Adult)
As 24 Hour Registration but additional adult in same room.
Adult Registration (Day Only)
Full day with tea and coffee breaks throughout the day, and buffet lunch.
Adult Evening Dinner & Entertainment (Evening Only)
Saturday night evening dinner (3 course meal) and light entertainment.
Child & Young Person Registration (24 Hour Package)
Must be accompanied by an adult. Includes bed within adult registrant’s room. **
£ Free
Child Registration (Day Only)
Must be accompanied by an adult.
£ Free
Child Evening Dinner & Entertainment
Must be accompanied by an adult.
£ Free
Childcare (3 – 16 years)
Childcare is provided from 08:30 until 17:30. Children / young persons have option to attend presentations and workshops and will join parents for buffet lunch.
£ Free
** Family rooms available (two rooms with joining door) for a supplement of £85 arranged with the hotel.
Sunday 18th May
Clinical Appointments £ Free (Please consider a donation)

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Telephone +44 (0)845 680 6367

Supplemental Information


FOP Action is pleased to bring together leading FOP experts and families to provide updates on FOP research, raise awareness and discuss the path to clinical trials.

Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles and other connective tissues such as tendons and ligaments progressively restricting movement and forming a second skeleton that imprisons the body in bone.

Travel Arrangements

Attendees are responsible for their own travel. Fly into Manchester Airport, the hotel connects to the airport terminals. Arrive at Manchester Piccadilly Train Station where a train direct to Manchester Airport is available. By car from South M56 J6, from North J5, follow signs for Airport Terminal 3, Postal code for Satellite Navigation: M90 3RA. The hotel has 220 parking spaces. Parking: £5 day, £3 evening, and £12 overnight.

Conference venue: Radisson Blu Manchester Airport

The hotel is connected to the airport. Gym, swimming and Spa facilities are available. FOP Action has reserved 18 disabled friendly rooms and large number of standard rooms, please quote Ref: FOP Action. Family rooms (two rooms connected by adjoining door) are also available. Attendees are responsible for arranging additional rooms / nights not included in their package. Full details are available at: www.radissonblu.co.uk/hotel-manchesterairport.


Dr Alex BullockDr Alex Bullock
Principal Investigator, Structural Genomics Consortium and University of Oxford FOP Research team.

Professor Fred KaplanProfessor Fred Kaplan
Isaac & Rose Nassau Professor of Orthopaedic Molecular Medicine, Director – Center for Research in FOP & Related Disorders, The University of Pennsylvania School of Medicine, Department of Orthopaedic Surgery.

Dr Bob PignoloDr Bob Pignolo
Assistant Professor, Ian Cali Clinical & Research Scholar, Center for FOP and Related Bone Disorders Departments of Medicine & Orthopaedic Surgery, University of Pennsylvania School of Medicine, Philadelphia, PA, USA.

Professor Eileen ShoreProf Eileen Shore
Cali/Weldon Professor of FOP Research; Laboratory Research Director and Co-Director of the Center for Research in FOP and Related Disorders; Scientific Advisor, IFOPA; Professor of Orthopaedic Surgery and Genetics, University of Pennsylvania.

Professor Jim, TriffitProf Jim Triffit
Emeritus Professor of Bone Metabolism and University of Oxford FOP Research team.


Presentations will run throughout the day and attendance is at your discretion.

Professor Jim Triffit (University of Oxford):
Welcome & FOP Research in Oxford: Past and Present

Professor Fred Kaplan (University of Pennsylvania)
From Mysteries to Medicines: Drug Development for FOP

Dr Alex Bullock (University of Oxford)
FOP Research in Oxford: Therapeutic Developments

Professor Eileen Shore (University of Pennsylvania)
Research Update

Dr Pignolo (University of Pennsylvania)
The Natural History of FOP: A Comprehensive global perspective

Please note we anticipate additional presentations to be announced early 2014.

Clinical Appointments

The primary purpose of the clinical appointments are to provide a consultation for families and to educate other doctors/researchers about FOP. Appointments will last no longer than 45 minutes. FOP patients are encouraged to bring, where possible, current x-rays and/or doctor’s notes for review.

Appointments must be made in advance and can be requested using the booking form. Priority given to UK FOP patients and those who have not previously met with the clinicians. We will do our best to accommodate your preferred appointment slot but cannot guarantee it. Appointment date/time confirmed as soon as possible once a booking has been confirmed.


Family, researcher and FOP patient workshops will take place throughout the afternoon of Saturday 17th May and may continue on the morning of the 18th (TBC).

  • Fundraising
  • Parents of FOP children
  • Living with FOP
  • Doctors, Specialist and Researchers

Children and Young Persons

Children (3 – 7 years): Supervised childcare will be provided for younger children and must be arranged as part of your booking in advance. Toys, games, stories, children’s videos, and crafts will be available.

Young persons (7 – 15 years): Older children can attend presentations / workshops if interested or can take part in a variety of age appropriate activities throughout the day. (Snacks and drinks will be provided).

All children will join their parents for a buffet lunch.

Evening Dinner and Entertainment

Please indicate any special dietary requirements when booking. A children’s menu is available and must be booked in advance. Please see booking form for full details. Light entertainment will be provide following the meal, subject to time.

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