During Fabry Awareness month, the China Fabry Community organised a series of activities to help Fabry Disease affected people both in a physical and mental way.
In April, together with ICF (Rare Disease Alliance Foundation) they organised a “Fabry Expert Online” program. Five Fabry experts from China were invited to speak, including a nephrologist, a cardiologist, a neurologist, a genetic counsellor and a paediatrician. Forty patients enrolled in the meeting and choose to follow sessions according to the topics they were most interested in. The experts even held online meetings with patients one on one, to answer their questions and give guidance and suggestions based on their individual needs. Most of Fabry experts in China are located in big cities like Beijing and Shanghai, but patients are located across more than 25 different provinces all over the country, so it is a quite long journey for patients to meet with Fabry experts, especially in these time. “Fabry Expert Online ” facilitated for patients to meet with expert in a highly efficient and convenient way. Fabry China received lots of positive feedback from their community for this initiative.
In May, Professor Yuansheng Xie, a famous nephrologist from the 301 Hospital (top General hospital in China), was invited to give a lecture to the community on the topic ”Dialysis & Kidney Transplant”. Renal involvement is the most common symptom, especially for classical Fabry patients. Lots of patients have concerns about this symptom and it is often misunderstood. During the lecture, Professor Xie shared the most pressing issues for dialysis and transplant patients, and then during a live Q&A he answered questions from those who attended the lecture online. Questions like; “When should I start dialysis/kidney transplant? Haemodialysis or peritoneal dialysis ,which one is more suitable for me? Shall I start the ERT during the dialysis? Will this impact the effectiveness of the ERT?” were answered. He also shared guidance on nutrition for patients. The lecture was recorded and shared with the Chinese Fabry community, allowing them to listen to it again when they want to.
Besides these topics, mental wellbeing issues were also covered. Two webinars were organised, one in April and one in June. One focused on “How to cope with Fabry ”, and the other one focused on ”Fabry & Children”. A psychologist spoke about the many complicated feelings that come with having Fabry Disease and several patients shared their own stories, which struck an emotional chord with the audience. More than 150+ Fabry patients attended these online meetings.
These activities were welcomed by the community and Fabry China received lots of great feedback for them. They also see the number of participants growing each time they organise something.
However, some lessons also have been learned from organising these activities, for example: they noticed that not everyone is ready to participate in online meetings, some people did not prepare their medical reports as required, and also not everyone was as positive or enthusiastic about these activities as expected. Fortunately, these lessons will help them to organize better events in the future. Based on the feedback, Fabry China will even try to plan these activities more regular, perhaps even quarterly to help and support the Fabry Community best.