Conference and Family Gathering 2020

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FOP Friends Lockdown 2020

We were all beyond disappointed to have to have taken the decision to cancel the 2020 conference, even though it was the right one and one that was out of our control.

To mark the occasion that would have been, we created a short video with help from some of our friends.

Our most grateful thanks go to the medical professionals who took time out of their day job, on the front line fighting the Covid-19 virus, to contribute to our message:


Due to the current global pandemic, FOP Friends took the sad but necessary decision to cancel the Conference.  Once we have further guidance on the safety and management of public gatherings, we will look to set a date in the future to provide our families and community the opportunity to meet once again,  Until then, please stay safe and well, and remember the safest place to be is home.

FOP Friends would like to invite you to the 4th Conference and Family Gathering at the Manchester Radisson Blu Airport Hotel.

We’re delighted to announce that Professor Fred Kaplan, Dr Richard Keen, Professor Robert Pignolo will be attending, as well as other internationally respected FOP medical professionals and researchers.

Whilst the focus will be on FOP, we warmly welcome any patients and families living with POH.  Professors Kaplan, Pignolo and Shore are also the internationally renowned doctors for POH.


There will be presentations from the pharmaceutical companies who are leading the way with the development of treatments for FOP.

Professor Alex Bullock will also speak about the research team at the University of Oxford have been carrying out, their progress, and the implications of this for patients living with FOP.

Dr. Gehan Abou-Ameira will give a presentation about the complications FOP can cause for patients who require dental treatment.  She will also run a short workshop for the children to teach them about the importance of excellent dental hygiene from a young age.

In the afternoon, there will be Q&A sessions for patients and families to ask questions of the experts.  There will also be workshops, guided by facilitators.

Download the Conference and Family Gathering 2020 flyer.

Clinical Appointments

Patients with FOP and POH are invited to request a personal clinical appointment with the FOP medical specialists, led by Professor Fred Kaplan, Dr  Richard Keen and Professor Robert Pignolo.

Taking place over three days (Friday 16th – Sunday 18th May), these appointment will give patients the opportunity to privately consult with the physicians regarding and concerns they have, specific to them.  These consultations are strictly by appointment only and must be booked through FOP Friends in advance.  It will not be possible to make an appointment on the day.

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



There will be a FriendZone for children (both with FOP and their siblings) and young people, so that they do not have to sit in with the presentations.  This is run by experienced volunteers who have run the creche facilities in the past.  They understand FOP and the activities are tailored to all their ages, interests, and physical needs.  This will enable parents to relax, focus on the speakers, and participate fully in the day.

Young people are welcome to attend the presentations, but we request that out of courtesy for the speakers and to enable all delegates to enjoy the presentations, that electronic devices/phones are not used in the conference room.

Family Gathering 2016

Watch the video from our 2016 Conference and Family Gathering… and see how the children have grown!

You can also download the delegate booklet from 2018 here: Conference and Family Gathering 2018.