FCS and SHTG related research opportunity

Feb 9, 2023

Following our first webinar dedicated to Familial Chylomicronaemia Syndrome, or FCS in short (you can watch it here), we are pleased to share some information about ongoing research about lived experiences of people living with FCS and severe hypertriglyceridemia (SHTG).

As the Rare Disease Day is fast approaching, we wish to bring your attention to FCS – another rare inherited lipid condition we advocate for.

The goal in completing this research is to deeply understand the perspective and experience of people on their journey with FCS or SHTG, with the aim of identifying ways to improve this experience. If you live with FCS or SHTG and would like to participate in this research or know someone else who does please find more details below.

The Study

  • 60-minute telephone interview to understand the person’s lived experience from pre-diagnosis (if possible) to ongoing management, as well as what they would like to see to improve their experiences.
  • For those interested, there is a possibility of doing a 2-hour online exercise over 2 days (i.e., 1 hour per day) and a 30-minute follow-up call.
  • In appreciation for participation, there is an honorarium of £100 for the 60-minute interview and £266 for those who complete the online exercise and follow-up call.
  • The research adheres to the rules of GDPR (General Data Protection Regulation), and the personal information of participants is protected and is never disclosed with third parties.
  • Limited to 3 countries only – the UK, France and Germany

Check the electronic leaflets below for more information, including participation criteria and contact details.

Please note:
FH Europe has agreed to disseminate this research information in order to connect with a greater community of people suffering from FCS and SHTG, to help empower our community with information and opportunities to have a voice and to help raise awareness of those conditions. We have also requested that the research outcomes would be shared with us to help improve our knowledge of patients’ ived experience.


FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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