FOP Friends Conference and Family Gathering 2018

Friday, 18 May, 2018 - 09:00 to Sunday, 20 May, 2018 - 18:00

FOP Friends would like to invite you to the third UK Conference and Family Gathering 2018.  This will be held again at the Radisson Blu Airport Hotel, Manchester. 

We are delighted to announce that Professor Fred Kaplan, Professor Robert Pignolo, along with Dr Richard Keen from RNOH will be attending, along with other internationally respected FOP experts.

This year’s main theme will be living with FOP, with a clear focus on patients and families.

There will be presentations from our world-renowned FOP experts along with representatives from the pharmaceutical companies who are at the forefront of FOP research.  Complications FOPers face with regard to their dental health will also be addressed by Dr Gehan Abou-Ameira from GOSH.  Attendees will also be able to ask questions during a Q&A panel session.

In the afternoon, there will be workshop sessions to provide an opportunity for families and FOPers to break off into groups and discuss topics of relevance to them.  The workshops will be guided by facilitators to enable attendees to get the most out of the sessions.

Clinical appointments will be available for FOPers, and led by Professor Kaplan, Professor Pignolo and Dr Keen.  Taking place over three days, appointments will give patients the opportunity to consult with the physicians privately. 

Childcare, and a quiet space for young adults, is provided to enable parents to participate fully in the day. 

There will be a family dinner in the evening with light entertainment provided.  This is an informal and fun affair where parents can relax together and simply enjoy each other’s company. 

We have been lucky enough to secure a grant from the Big Lottery Fund (National Lottery).  This means that patients, their main carer, parents and siblings can benefit from a generous discount of 50%, freezing the cost to 2016 prices. 

Book online now: CLICK HERE


(Subject to change)

Friday 18th May
09:00 – 18:00: 8 x 40 Minute clinical sessions held on the hour. *
19:00 – 22:00: Informal “Meet and greet”
Saturday 19th May
08:30 -  09:00: Registration
09:00 – 12:00 Presentations
12:00 - 13:00 Buffet Lunch
13:00 – 18:00: 5 x 40 Minute clinical sessions held on the hour. *  
13:00 – 17:00: Workshops & presentations
19:30 – 23:00: Evening dinner & entertainment
Sunday 20th May
09:00 – 18:00: 8 x 40 Minute clinical sessions held on the hour. *

*Clinicians: Professor Kaplan, Professor Pignolo, Dr Keen.  These MUST be booked through FOP Friends in advance.

All efforts will be made to accommodate times requested. However, due to overwhelming demand, we may not be able to allocate exact times to all patients.  We appreciate your understanding with this matter.

 Meet and Greet

On Friday evening, we would like to invite you to an informal Meet & Greet event.  It is a chance to catch up with old friends, and make some new: an opportunity to put faces to the names of people you may have only heard about!  Just come along after you’ve unpacked your suitcase.

There is a cash bar and children are welcome to attend.

This event is held in the Dublin Suite.  Please ask at Reception if you can’t find us.



We provide a free crèche for all children and we encourage all parents to take advantage of this service.  The crèche is organised by trustee Fiona White, and Janet Plumb.  All crèche staff are  experienced childcare professionals.  Please book your sessions as part of the online booking process.  This will allow us to arrange for enough staff.  All childcare helpers are DBS approved.

All activities are optional, and children can choose what they do and don’t take part in (although we do find that once the kids get there, they don’t know what to do first!).

Past activities have included:

Crafts, including junk modelling and jewellery making

Lego, toys and games


And stories…. to name but a few.

Snacks are available throughout the day.

Creche staff are on hand to play with the children, or the children can play with each other, or by themselves.  The choice is theirs!

Young adults can take advantage of a quiet space in the room where they can do their own thing. They will not be required, but are welcome, to join in with the activities.  They are welcome to bring their own devices to the creche, but FOP Friends cannot take any responsibility in the event of and loss or damage to the device.

The children are collected by their parents at lunchtime and then they return to the creche after the lunch break, so the parents can take part in the afternoon sessions.

As a courtesy to the both the speakers at the Conference, and to the delegates attending, we respectfully request that any children/young people who choose to stay in the conference room with their parents, do not distract other delegates who are trying to listen to the speakers.  As electronic devices can be a distraction to others, we do not allow children/young people to play on devices in the presentation room. 


Due to health and safety reasons, young people will not be able to sit in the communal areas of the hotel unsupervised.


We have been lucky enough to secure a grant from the Big Lottery Fund.

This means that patients, their main carer, parents and siblings can benefit from a generous discount of 50%, freezing the cost to 2016 prices. 

All other attendees must pay the full fee.  Additional accommodation must be booked directly with the hotel.  Click here to visit their website.

Double occupancy and family room prices for Sat 19th May include: conference, evening meal and bed and breakfast for two adults.  A family room additionally includes evening meal and bed and breakfast for up to two children.

Full price booking
Friday 18th May 2018 Saturday 19th May 2018
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 18th May 2018 Saturday 19th May 2018
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 



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 .  To book now, CLICK HERE

If you have any queries or problems with the booking system, please contact us on +44 (0)300 323 9989 or email us at .

Online booking closes Friday 27th April 2018.  Should you wish to book after this date, please contact us.

Travel arrangements

Attendees are responsible for their own travel.  As the price for attending the Conference has been heavily discounted, FOP Friends is unable to offer any travel subsidies to families. 

  • 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
  • By Metrolink: The airport is also accessible via Metrolink on the 6 Manchester Airport - Victoria line

Venue: Radisson Blu Manchester Airport

Gym, swimming and Spa facilities are available at the hotel.  It is fully accessible. 

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 FOPers and their carer/family 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 2018.


Family, researcher and FOP patient workshops will take place throughout the afternoon of Saturday 19th May.  We would like to encourage as many people as possible to attend, so people can learn from the experiences of others.

This year, we are holding an addition Drop in and Chat session on Sunday morning (9:30am - 11am TBC).  This will provide families with a further opportunity to discuss and share thoughts about issues that may have arisen during the weekend.

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.  Snacks and drinks are provided.

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, or simply play on their own devices (no responsibility for devices will be taken by FOP Friends).

As a courtesy to presenters and delegates, we respectfully request that children/young people do not attend the presentations and then play on electronic devices as this can be a distraction to other attendees.  We thank you for your support on this matter.

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. 


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 Saturday 31st March 2018 – Full refund

• Cancellations on or after Sunday 1st April 2018 – 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 are happy for us to do this.

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.

All Content (C) Copyright FOP Friends 2018

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

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