Action FCS

08/07/2026

Your voice matters - take part in research to increase the understanding of the impact of FCS

Are you a person with FCS or someone close to someone who is?Have you had an interview with Synergy Healthcare Research yet?

Participating in this research is an important way to get the impact of FCS on both patients and those close to them understood by those who need to know, and potentially published as research - something that healthcare professionals take more seriously than one person's experience!

Just an hour (paid) will offer everyone affected by FCS the chance to see our experiences quantified and validated - but for this to happen it needs as many people to take part as possible.

Participation involves an online interview via Zoom lasting around an hour (or up to 90 minutes if joined by someone close to you), where you will be asked about how the condition affects daily life, your journey to diagnosis, treatments, other support you’ve received, and your hopes for future care.

All data will be kept anonymous in line with data protection guidelines, and findings will be combined into anonymised reports used to improve patient support and information. It is hoped that results will be published in a medical journal.

Participants must be over 18; if you offer support to someone living with FCS, they also must be over 18.

A thank‑you as an Amazon, John Lewis or M&S voucher, or by bank transfer (you can choose) will be offered for your time.

If interested, you can reply to Amy Page at [email protected] to arrange a short eligibility call and discuss any questions.

15/06/2026

Your voice matters - take part in research to increase the understanding of the impact of FCS

Synergy Healthcare Research is inviting people with Familial Chylomicronaemia Syndrome (FCS), as well as parents, carers or others supporting someone with FCS, to take part in a research project exploring their experiences.
Participation involves an online interview via Zoom lasting around an hour (or up to 90 minutes if joined by someone else), where you will be asked about how the condition affects daily life, your journey to diagnosis, treatments, other support you’ve received, and your hopes for future care. This is not a clinical trial.
All data will be kept anonymous in line with data protection guidelines, and findings will be combined into anonymised reports used to improve patient support and information. It is hoped that results will be published in a medical journal.
Participants must be over 18; if you offer support to someone living with FCS, they also must be over 18.
A thank‑you as an Amazon, John Lewis or M&S voucher, or by bank transfer (you can choose) will be offered for your time.
If interested, you can reply to Amy Page at [email protected] to arrange a short eligibility call and discuss any questions.

NICE appraisal

The committee meeting for Olezarsen for treating familial chylomicronaemia syndrome [ID6585], will be held on Thursday 25 June 2026. Registration is now open on the NICE website. The meeting will be held virtually, using Zoom, a secure web conferencing tool.
You can find the links to register directly on Zoom on this page https://meetnice.zoom.us/meeting/register/e3QnbZJ_RK-TP6PCpXVCRA #/registration
Please read the ‘Important information on how to register’ carefully.
As you will be able to register directly on Zoom for the meeting, you will automatically be granted a place, so please note the meeting date and time in your diary as you will no longer be sent a confirmation email. Your joining link and further instructions will be sent to you 1-2 days before the meeting.
Registration will close at 4.00pm on Thursday 18 June 2026.
You are invited to observe this committee meeting as a public observer. As a public observer, you will be able to listen to the business of the meeting, except where confidential information is being discussed, however, you will not be able to:
participate in committee discussions
ask questions, take part in voting or put your views to members of the committee
For further information about meetings in public please refer to the following document: Common questions and answers about virtual committee meetings.

Evaluation committee meeting for olezarsen for treating familial chylomicronaemia syndrome [ID6585]

30/03/2026

The report about our recent event is now up on our website, along with lots of lovely photos. You can read it here www.actionfcs.org

The event was on Rare Disease Day and we named our rare zebra FranCiS. Pictured below is Elisete and FranCiS modelling Rare but Mighty beanies which were kindly donated by Michal and Karonlina, members of our community.

24/03/2026

We had a great time at our event in Birmingham on Rare Disease Day and hope to do another one next year!

02/02/2026

We're extending our registration deadline for our Patients, Parents, and Carers event in Birmingham. If travel expenses are a problem for you, please let us know.

It's a great chance to meet your community and be around others who understand without an endless explanation. Don't miss the opportunity!

Email [email protected] to get your registration form.

If you're unable to attend, you're welcome to join online - just let us know and we'll send you a link nearer the day.

06/12/2025

We're delighted to have organised an event for patients, parents and carers in Birmingham on 27/28 February 2026. If you are a health care professional, please alert your patients!

- Places are limited and will be allocated on a first-come, first-served basis with preference given to patients and carers resident in the UK.
- For full details and the registration form, please email [email protected]

Register early to ensure your place. We hope to see you there!

30/11/2025

Survey closes today! Add your voice https://forms.microsoft.com/e/EXHDUqrj57

25/11/2025

IMPORTANT to both patients and caregivers

If we want the best decision on new medicines for our community in the UK (a decision that influences other countries), it's vital that we share our experiences of living with FCS using the survey below. Your responses help us, as the patient organisation, to best represent the impact FCS has on us all. Patients and carers worldwide are invited to participate.

The closing date is 30 November so there's still time to add your voice.

Your participation can have a direct impact on decisions made. Lets make sure they're the right ones!

Take part now: https://forms.microsoft.com/e/EXHDUqrj57

If you're a healthcare professional reading this - please remind your patients to take part.