We would like to share with you the results of the survey we ran at the end of 2021. We want to thank you for taking the time to complete the survey and for sharing your input. We appreciate this very much and know that we will take these outcomes with us to support you better in the future.

This survey was run as a collaboratives project between the Fabry International Network (FIN) and Amicus Therapeutics and our aim was to gather feedback and insights from our membership on your current challenges. We wanted to understand how engaged you feel your communities are and to identify what communication ideas and activities would support you best in the future.

The survey was completed by 30 patient organisations from 29 countries. The surveys were translated into local languages.
We learned that your key challenges are

  • Supporting newly diagnosed Fabry patients and those who feel they may have Fabry but can’t get diagnosed
  • Supporting patients to manage their day-to-day symptoms with their healthcare teams
  • General ongoing COVID-19 pandemic issues around understanding COVID-19 risk for Fabry patients

Overall, those who participated feel your communities are engaged (40%) or slightly engaged (26.7%) with the patient organisation in general and attending events that the patient group/industry hosts.

Over 80% of you think in-person meetings are the most valuable way to engage the Fabry community.

Take a look a the infographic to find out all about it.  FIN will take all of these outcomes with us to support you better in the future. Feel free to reach out if you would like to discuss in more detail.