Registration for the UK Fanconi Anaemia Conference and Social Weekend from Fri 13th to Sun 15th September 2019 is now open!

This event, to be held at  PGL Caythorpe Court, Lincolnshire is for people in the UK and Ireland with Fanconi Anaemia, their parents, partners, carers and children to learn more about living with FA and about getting to know others in the same position. To get the most out of the weekend we recommend that you stay from the Friday evening (5pm onwards) till the Sunday lunchtime when the event finishes. (Although you can also continue on the Sunday afternoon enjoying activities such as the climbing wall on a ‘Queue and Do’ basis.

Accommodation and all meals will be provided free of charge. Each room is ensuite, has 2 sets of bunks for 4 people, and you will not be expected to share with others.

Please note that travel costs will not be covered.

Activities will be available throughout the weekend led by qualified PGL and nursery staff for children from 0 to 18 years. There will also be a separate room set up for FA teens and young adults. PGL-led activities will include zip wires, high ropes, giant swings. These are suitable for children from age 5 upwards, subject to being of sufficient size to fit in a safety harness. There will be an indoor inflatable play area in the creche and childrens’ (and adults!) bouncy castles immediately outside the Courthouse conference building. Wifi will also be available in the Courthouse.


Friday 13th Sept


You may book in to the PGL Centre from 3pm and there will be an evening meal from 5pm.

At 7pm there will be a welcome session with PGL Staff for the 7-17 year olds and at the same time there will be a fascinating talk on Sea kayaking the shipping forecast by Toby Carr who was born with FA and is the process of canoeing round all the areas in the BBC Shipping Forecast. Read more about Toby. This evening will be a good opportunity for people to start to get to know each other.

Saturday 14th Sept


The day’s events will start at 9am with include a range of presentations by expert medical professionals and the opportunity for more informal discussions in small groups. There will be sessions running too on some non-medical aspects of living with FA and about the Fanconi Hope Charity. There will be some separate parallel sessions for teens and young adults too. The afternoon will finish off with an adult Adventure session so that you don’t miss out on the High Ropes etc! This is of course optional.

On Saturday evening, weather permitting, there will be a barbeque and raffle draw on the lawn, then a campfire close by, followed by a cheese and wine reception  back in the Courthouse. This will provide many opportunities to get to know each other better and to discuss FA with a number of qualified medical people.

Sunday 15th Sep


There will be further activities for the 7-17 year olds and sessions in the Courthouse covering a range of topics including financial support, insurance issues, trips and treats available for children with FA and a session on education and school issues by a qualified teacher who has worked in both mainstream and hospital schools.

The event will close after lunch at 1pm.

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Directions to the Centre.

Address: PGL Caythorpe Court, Caythorpe, Grantham, Lincolnshire, NG32 3ER. See map below.

Arriving by car: Drive to the centre where you will be directed to a car park when you sign in.

Arriving by train: Grantham station is on the London East Coast Main Line, and taxis to the Centre from there take around 20 mins.

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What people said about our last UK FA Conference (In 2017 at Twycross Zoo)

“I can’t thank everyone enough for the amazing weekend put together. We now feel like part of a community, instead of on our own xx”

 “Crazy isn’t it! How 1 weekend can change it all. I feel so much better about everything today. It’s never going to be great, but we’re in it together xx”

“Would just like to say thank you to everyone who made this amazing weekend possible, couldn’t have been better!”

“For me, I now don’t feel so isolated as an FA mum and meeting and chatting to such wonderful people was amazing”

 “Learnt so much even after 14 years of FA, the advances in research and the knowledge that is now available is unbelievable”

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