Ramblings of a CEO Part 1
Our new Chief Executive has been reporting back on his experiences and what he is learning at the 14th Annual WORLDSymposium.
So what have I learned so far from the WORLD gathering?
1. The passion to make a difference here is quite simply staggering and there are many inspirational people here who are so driven by an unwavering desire to make a difference to the Fabry, MPS and related diseases community.
2. The potential treatment options are a reason for genuine hope and optimism but we do need to remember that we are in a space that is at the very edge of our current understanding both medically and technology. I like to, use the phrase “cautiously optimistic”.
3. There is much work to do across the globe in promoting early diagnosis within local hospitals and GPs, not just at specialist centres. That is a very simplistic statement I know and there are real challenges involved, but I believe patient organisations have a role to play here with clinicians on developing a better understanding of the range of diseases and how they present so that local centres can pick up on the red flags sooner.
4. The area of mental wellness is still a huge unmet need.
5. Some treatments have unintended social consequences for individual sufferers and their support networks. This is as important as the treatment itself in many cases.
This is just some initial thoughts from a sleep deprived CEO! More ramblings to follow.