Based on the outcome of a Virtual Round table Meeting held in December – Advocating for better care for the Fabry Community, FIN drafted a letter that could be sent to the Fabry Expert centres in each country. The letter was signed by the patient organisation leaders present at the roundtable; similarly the letter is available to all members (regardless of webinar participation) for adaptation to your respective Fabry treatment centres.
The objectives are
- Highlight the need for continuous care and monitoring for Fabry disease patients
- Remind them of action needed for newly diagnosed patients, those in the midst of the diagnostic process or those experiencing symptoms for the first time and needing assessment
- Emphasise the need for ongoing clear and consistent communication from the centres about patients’ care and having regular appointments (in-person or telehealth)