FOP Friends

FOP Family Weekend Break
2021-03-12 - 2021-03-15 | Center Parcs, Sherwood Forest, Newark, NG22 9DN
Our third Family Activity Weekend Break will take place and the destination will again be Center Parcs, Sherwood Forest, Nottinghamshire; a prime location for travel across a wide geographic area.
Subject to us securing grants to cover the cost of the Weekend, the proposed dates are: Friday 12th – Monday 15th March 2021.

Rare Disease Day
2021-02-28
FOP affects just 1 in 1.4 million people. This means it’s an ultra-rare disease. It’s one of the cruellest and most disabling conditions known to medicine. There is no known treatment or cure although current clinical trials are proving we do have hope in the future.
Share our social media posts on Rare Disease Day and help us to raise awareness and cure FOP.

Jeans for Genes Day 2020
2020-09-14 00:01 - 2020-09-20 23:59 (Europe/London)
Sign up your school or workplace for Jeans for Genes Day 2020. Help raise money and awareness for everyone living with a rare genetic condition.

Great North Run
2020-09-13
We have places on our Great North Run team, and we would love for you to get involved! The Great North Run is the largest half marathon in the world, taking place in Newcastle upon Tyne.

FOP Friends UK Conference & Family Gathering: CANCELLED
2020-05-15 00:00 - 2020-05-17 23:59
CANCELLED
In line with UK Government guidelines in response to the global pandemic, the trustees took the difficult but necessary decision to cancel the 2020 Conference in May.
We will await further advice on whe it is safe to hold public gatherings once again, and will keep people aware.
We are hoping to share some memories of past conference on social media this weekend to celebrate what would have been.
But until the next time, please stay safe and well. Remember, the safest place to be is home.
FOP Friends invites you to the 2020 UK Conference & Family Gathering. The event will take place in Manchester, UK at the Radisson Blu Airport Hotel. The main event is on Saturday 16th May 2020 with pre-booked clinical appointments available with our world-renowned FOP experts on Friday 15th, Saturday 16th (afternoon), and Sunday 17th.
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 16th we will host an evening meal with light entertainment.
We are thrilled to be hosting the UK’s first screening of Tin Soldiers on Sunday morning 10am for 10:30am. Entrance to the event is free, but by ticket only. Make sure you reserve your ticket when booking.

#FunFeet4FOP
2020-04-01 - 2020-04-30
Raise awareness by getting your school, workplace, local community to take part in our #FunFeet4FOP campaign. Snazzy socks, wacky wellies, pets in slippers, eye-catching pedis – it doesn’t matter how you pose as long as you have fun feet & toes! Snap a photo of your funky feet & help those with FOP.

Rare Disease Day
2020-02-01 - 2020-02-29
FOP affects just 1 in 2 million people. This means it’s an ultra-rare disease. It’s one of the cruellest and most disabling conditions known to medicine. There is no known treatment or cure although current clinical trials are proving we do have hope in the future. Share our social media posts on Rare Disease Day and help us to raise awareness and cure FOP.
