Conference and Family Gathering 2022

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We are excited to share with you the What’s On guide for the weekend.  It’s going to be a fun-filled affair ~ we can’t wait to welcome you all back!

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

We’re back!  After careful consideration and deliberation, we’re delighted to announce that our Conference and Family Gathering will be held, in person at the Manchester Radisson Blu Airport Hotel and researchers.

We remain committed to the wellbeing of all our attendees.  We recognise that Covid-19 is still a concern for many.  We will continue to take extra precautions, and to monitor and respond to the situation as appropriate.

We will be hosting medical professionals from around the world to present on a range of topics.  We will also be offering a clinical appointment for patients with FOP or POH.

We look forward to seeing you there!

Download our keynote speaker list here

We are excited to be welcoming FOP and POH specialists from around the world to Manchester 2022.  Hope to see you there too!

Exciting news: Update for FOP families

Thanks to additional grants we have secured, we are now able to offer further assistance towards the cost of the main room for the person with FOP, for two nights.

For more information, visit:

What’s on…

We will be welcoming FOP specialists from around the world to speak on topics of some of the different aspects of living with FOP.  We will be updating you on the work at the University of Oxford’s FOP research team.  There will also be representatives from some of the pharmaceutical companies who are working on developing a treatment for FOP.  Hope Newport and Karen Kirchoff from the IFOPA will also be attending to share news about their programmes as well as the Ability ToolBox.

There will be workshops for attendees to speak with each other and share their own experiences.

We will of course be having our Family Dinner on Saturday evening to give friends, families and attendees to simply enjoy the company.

Clinical appointments

We are pleased to be able to offer our patients a private clinical appointment with FOP specialists.  We have reviewed the organisation of appointments this year, in light of Covid arrangements and to allow for social distancing, and there will be noticeably fewer professionals in attendance.  All appointments will the run in accordance with NHS best practice guidelines at the time.

The doctors who will attend your appointment, and the times, will be allocated after the booking window has closed.

Dental appointments

In addition to the clinical appointments, we are also offering our patients a private dental consultation with an FOP specialist dentist.  Once you have booked onto the Conference, we will get in touch to arrange.

What’s on…

We have put together an exciting programme for our conference, including presentations, workshops, clinical and dental appointments, and even a genetics-themed Escape room.

Download the Programme to find out more…

Covid-19 Update

Although restrictions have now been lifted in the UK, we recognise that Covid is still a very real concern for our families.  We are taking advice from the NHS and are following their best practice.  The hotel is spacious with opportunity for social distancing.  We have moved the FriendZone to a larger room to improve air-flow and social distancing.  There will also be fewer doctors in the clinical appointment suite to allow for social distancing and guest comfort.  We will follow all government guidelines as relevant at the time, and respond as necessary.

FOP Friends is 10 years old!

We will be celebrating our 10th birthday as a registered charity in June this year!  That’s 10 years of being a part of this amazing community.

We are excited to be sharing 10 years of fundraisers, events and memories!


Our younger guests are invited to join the FriendZone.  This is for children and young people with FOP, as well as their siblings.  It is free of charge.

This is run by experienced volunteers who have run our creche facilities in the past.  They understand FOP and the activities are tailored to all their ages, interests, and physical needs.  Drinks and snacks are provided throughout the day too.  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, electronic devices/phones are not used in the conference room.

UK Premiere Screening of Tin Soldiers

“Tin Soldiers is the deeply personal story of people afflicted with one of the world’s most rare conditions and the search to identify those still living in the dark – the victims whose symptoms defy the understanding of those around them.

A compelling tale of courage set against the backdrop of medical science, this is the story of real life ‘Tin Soldiers’ overcoming human frailty to show that within a body, sabotaged, can surge the spirit of a survivor.”

Delegates are invited to watch the film on Sunday morning, free of charge.