Bob has had a busy month, attending the SSIEM Annual Symposium 2022 in Freiburg, Germany. The SSIEM, is the Society for the Study of Inborn Errors of Metabolism. Bobs says, “I have had the opportunity to meet with many of the pharmaceutical companies that are developing new treatments and therapies for our diseases, get the latest information on clinical trials globally, meet with many of the clinicians from around the world and even catch up with a few other patient organisations.”
"It has also been a great opportunity to seek new collaboration initiatives for our subsidiary Rare Disease Research Partners, who have a global reputation for supporting patients and patient focused research in the clinical trial arena .
I have to say that both as the Group CEO of the MPS Society and as a MPS dad I am excited by some of the emerging technologies that will in the future transform the outlook for many of our diseases. The science being carried out in MPS and other LSD’s is right at the cutting edge of what is possible in scientific endeavour and is as challenging as sending an astronaut to Mars. We are also extremely lucky to have such dedicated clinicians to support us as patients and families that I look forward with a sense of renewed hope in an otherwise challenging world."