FOP Friends, UK Conference & Family Gathering

Friday, 20 May, 2016 - 09:00 to Sunday, 22 May, 2016 - 18:00
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), and Sunday 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.

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. 

What is it all about?

This is best understood by describing the 2014 UK FOP Family Gathering which was a great success, and the reason we are running this again.

Twelve years after the last UK FOP event we held a conference and family gathering for families from across the country and the globe. The aim of the event was to gather together families impacted by FOP in a relaxed environment allowing them to meet others living with the same circumstances.

The event started early on Friday morning with Drs. Kaplan and Pignolo flying into Manchester. They ran clinical appointments all day, meeting many patients, some they had met previously, others new – all overwhelmed at meeting their ‘heroes’.  The waiting area overlooked a sunny, yes sunny, Manchester Airport and the atmosphere was happy and hopeful.

Behind the scenes, the team was busy getting ready for the evening’s meet and greet reception as well as preparing for the following day’s conference. At 7pm, families gathered for the reception with attendees coming from, amongst other places, the UK, Sweden, Greece, Malta, the Netherlands and even South Africa and Australia. The hour-long reception ended when the bar closed three hours later!

Saturday dawned and the families gathered. A crèche was provided for the young children which was a real hit! Staffed by qualified teachers, the children had a great time playing and meeting each other and particularly enjoyed the trips to the hotel penthouse to see the planes taking off!  The crèche enabled the parents to enjoy the conference, taking the time to listen to the presentations and meet other parents to have great conversations.  Presentations were given by FOP doctors and researchers from around the world.

Delegates had the opportunity to ask questions of all the speakers in the afternoon which was extremely well received. The families had different levels of understanding of FOP, depending on when they received a diagnosis, and the doctors and researchers were able to answer all questions.

The day was topped off by an evening meal and quiz, which ended with an unexpected karaoke round, creating some fun competition – Dr Christiaan Scott from South Africa was the star of the night!

The feedback from the three-day event was overwhelming with the most frequent comment being ‘When is the next one?’!  Lasting friendships were made and many delegates received support they didn’t know existed. Tears were shed and hugs were exchanged: the FOP community came together in spectacular style! View full 2014 story HERE!


Thanks to grant and sponsor support we are offering a discounted fee to patients, their main carer, spouse/partner and immediate family members (parents, siblings).  All other attendees must pay the full fee.  Additional accommodation must be booked directly with the hotel.   

Full price booking
Friday 20th May 2016 Saturday 21st May 2016
B&B (single occupancy) £115 Conference, evening meal, B&B (single occupancy) £170
B&B (double occupancy) £130 Conference, evening meal, B&B (double occupancy) £260
B&B (family room) £220 Conference, evening meal, B&B (family room) £360
    Conference, day only £45 PP
    Evening meal only £30 PP
Discounted booking (Limited to: patients, their main carer, spouse/partner and their parents and sibling (immediate family members)
Friday 20th May 2016 Saturday 21st May 2016
B&B (single occupancy) £60 Conference, evening meal, B&B (single occupancy) £90
B&B (double occupancy) £70 Conference, evening meal, B&B (double occupancy) £140
B&B (family room) £120 Conference, evening meal, B&B (family room) £180
    Conference, day only £25 PP
    Evening meal only £20 PP

Double occupancy and family room prices for Sat 21st May include conference, evening meal and bed and breakfast for two adults. Family room additionally includes evening meal and bed and breakfast for up to two children.

Additional Information

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 progressively restricting mobility and forming a second skeleton imprisoning the body in bone.

FOP Friends is pleased to bring together leading FOP experts with families in an informal and collaborative environment.  Clinicians are welcome to learn more about FOP from the world experts and to take part in clinical sessions on request.  Please contact us in advance to discuss further.


All bookings must be made online. If you have any queries, please contact us on +44 (0)300 323 9989 or email us at events@fopfriends.comOnline booking closes Sunday 17th April 2016.  Should you wish to book after this date please contact us.

Travel arrangements

Attendees are responsible for their own travel.  Flying into Manchester Airport, the hotel connects to the airport terminals via covered walkways.  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 2, Postal code for Satellite Navigation: M90 3RA.  The hotel has 220 parking spaces.  Parking: £9 day and £15 overnight.

Venue: Radisson Blu Manchester Airport

The hotel is connected to the airport.  Gym, swimming and Spa facilities are available. Attendees are responsible for arranging additional rooms / nights not included in their package. Full details are available at:

Clinical appointments

The primary purpose of the clinical appointments is to provide a consultation for families and to educate other doctors/researchers about FOP.  Appointments will last no longer than 40 minutes. Appointments must be requested in advance through the online booking process.  Priority is 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.  The date/time of appointments will be provided as soon as possible but no later than the end of April 2016.


Family, researcher and FOP patient workshops will take place throughout the afternoon of Saturday 21st May.

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 meal is available and must be booked in advance. Light entertainment will be provided following the evening meal. 

Terms & Conditions

Online registration constitutes a legally binding agreement. If you have not received confirmation and/or final information 7 days prior to the conference, contact FOP Friends on 0300 323 9989. We cannot be held responsible for the non-arrival of information.

Cancellations: We will do our best to ensure that the conference goes ahead, but we reserve the right to cancel at any time. If we do so, we will refund your conference fee in full but will have no further liabilities to you. In particular, we will not meet the costs of any pre-booked accommodation or travel. However, where we are forced to cancel as a result of events outside of our control, we will have no obligation to offer a refund of your conference fee.  If you cancel your booking, we shall refund you the fee paid on the following basis.

  • Cancellations on or before 31st March 2016 – Full refund
  • Cancellations on or after 1st April 2016 – No Refund

Payment: All bookings must be paid online at the time of booking. The payment is made online and all debit and credit cards are accepted.

Clinical Appointments: are limited.  Priority will be given to UK FOP patients and those not previously seen by the clinicians.

Changes to conference programme: Although we will do our best to follow the published programme, we reserve the right to change it (including speakers and presentations).  In the event that we need to change the venue, we will give you as much notice as is practicable.  If such changes are made, no refund of the conference fee shall be made.

Speakers: The views expressed by guest speakers are theirs alone and do not necessarily represent ours.  We can take no responsibility for the content or the accuracy of the speakers' presentations.

Marketing and filming: There may be a professional photographer and/or video production taking place during the conference which may be used for future marketing and promotional purposes. By attending the event you are accepting that if a photograph or video footage is taken of you at the event, FOP Friends owns the right to use the photo for any purpose they see fit.

It is not permitted for any conference attendee to film or record any session at the event either for their own purposes or to stream online without express permission from FOP Friends prior to the conference. Anyone seen to be doing this may be asked to leave the event with no refund available.

Data Protection: We would like to include your email in the conference delegate list (hard copy and electronically). This will only be made available to attendees of the conference (this may include sponsors and exhibitors). Please click the box on the registration page if you do NOT wish us to include your email address.

Liability: We will accept liability to you for any death or personal injury caused by our negligence, any fraudulent misrepresentation by us, and any liability which cannot be excluded by law.  In no other circumstances will we have any liability to you except as set out in these Terms and Conditions.  In particular, we accept no liability for the loss of your personal property at the conference.

Governing law: These Terms and Conditions shall be governed by and construed in accordance with English law and the parties irrevocably agree to submit to the exclusive jurisdiction of the courts of England over any claim or matter arising under or in connection with these Terms and Conditions. Delegates will be expected to comply with these Terms and Conditions, the rules of the venue and the reasonable requests of the organisers. Failure of delegates to do so will entitle us to cancel or terminate your attendance at the conference.

Conference organisers: This event has been brought to you by FOP Friends. FOP Friends is a Registered Charity in England and Wales #1147704 whose registered office is at The Cabin, 1 Cumberland Road, Sale, Cheshire, M33 3FR.

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FOP Friends is a Registered Charity in England and Wales #1147704

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