A fabulous meeting of the FCS community at the beautiful Grand Hotel in Birmingham
On Friday 27 February members of the FCS community, patients, parents, and carers, met at the Grand Hotel in Birmingham for the first whole day meeting focusing on FCS and its impact, generously sponsored by Sobi, and Arrowhead Pharmaceuticals. The first thing that was different was skimmed milk in the fridge, and FCS friendly snack bars in our rooms!
At 7pm we gathered together to say hello, and at 7.30pm sat down for the FCS friendly welcome dinner.
The custom menu gave fish, chicken or vegetarian options. A big shout out to Brad, the hotel chef, who created a delicious feast. Particularly appreciated was the honey and tonka bean rice pudding with seasonal fruit compote dessert. Brad kindly shared the recipe with us.
We were also generously supported by Boka, who donated a large number of their health cereal bars - enough for everyone to indulge. Boka have also created a 20% discount code for the FCS community: FCS20. Boka are only available online and are less than 1g fat and 2g sugar per bar.
On 28 February 2026, trustees Helga and Fin welcomed everyone as they registered for the day and collected their goody bag. including some new people who came only for the day.
Jill Prawer opened the proceedings with a welcome message, and thanks to our sponsors, Arrowhead Pharmaceuticals and Sobi. She went on to describe the history of Action FCS, and gave a vote or recognition and thanks to all the trustees in the room, both 'old' and current, many of whom were in the room.
Jill then set the charity in the context of the wider rare disease community and of the world of patient advocacy.
As 28 February is the annual Rare Disease Day, our rare zebra was introduced to the everyone, with a challenge to come up with a name by the end of the day.
Bilal Bashir was sadly unable to join us, but he sent a filmed presentation of findings from the FCS and MCS registry run from University Hospital in Manchester. Atiqah Sapiyan, who worked alongside Bilal and will continue this work, took our questions about the registry. You can watch Bilal's presentation here.
After a break, we came back for a session with dietitian Louise Robertson, with whom we discussed the dietary restrictions and challenges of FCS. Louise brought many ideas and resources with her, including a cookery book of South Asian recipes. You can find the book online here.
After lunch Dr Charlotte Dawson explained how we come to have FCS, and what effect it has on our bodies. She then took time to discuss current treatments available, and the new treatments on the horizon which will be appraised by NICE (National Institute of Health and Care England) in June and July. Dr Dawson has been nominated to represent NHS England during the forthcoming discussions.
Jill then did a quick overview of the medicines regulation process 'from bench to bedside' which charts the progress from the first discovery of a potential agent, through gathering proof that it works, regulatory approval from MHRA (Medicines and Healthcare Products Regulatory Agency), and then to a NICE appraisal where it is decided if the medicine can be made available to patients on the NHS, and if so, which patients specifically. Action FCS will be representing the patient voice at the upcoming meetings.
The final two sessions focused on mental well-being with FCS with a panel of patients and carers discussing how they manage to keep themselves (mostly) positive and difficulties they have encountered. Topics discussed included the life-changing moments when someone feels 'enough is enough' and begins to make positive decisions to improve their quality of life, and tips and suggestions to support young people leaving home and beginning to make only their own decisions about their food.
During the last session we named our rare zebra FranCiS and awarded beanie hats to the winners Teevi and Elisete who suggested the name. Hats were also awarded to Carlow and Devon who were both fantastic throughout the day - Carlow delivering the microphone when someone wanted to ask a question, and Devon with encouraging people to make short videos. Other beanies were given to those in the room clamouring for them! Many thanks to Michal and Karolina for their kind donation of the beanies.
