A window to our world

By Shaun Clayton, Director of Membership Support at the PHA UK "Welcome to our new regular feature, where I’ll be updating you on what’s been going on inside your charity." A window to our world

"For those that don’t know me, I’ve been working here at the PHA UK for almost ten years now, helping to drive the charity forward, keep all the plates spinning, and, of course, ensure we are doing all we can to support our PH community. Here’s a snapshot what’s been going on over the last few months… We’ve been working on making our website the best it can possibly be, following a huge spike in traffic during the COVID-19 pandemic. I’m very proud that so many people turn to our site as a source of trusted information, and the increase in visitors has prompted us to look at how we can make our online presence even better. Following a complete overhaul, www.phauk.org now has a new look, new navigation and refreshed content – making it easier to find what you’re looking for. One of the highlights is the new ‘support’ section, a central area bringing our supportive tools and resources together, and we’re pretty proud of the improved search function too. And we’ll soon be adding a new and improved clothing range to our online shop – so keep an eye out for some eye-catching designs! Do get in touch if you have any feedback on these website changes. On the subject of the internet, we’ve seen a bit of chatter on our online forums about a new drug called sotatercept, so I thought it would be helpful to shed some light on this therapy. Sotatercept is a new ‘first in class’ drug that is being developed by a US-based pharmaceutical company called Acceleron. ‘First in class’ means that this therapy treats PH in a completely different way, so it’s potentially an exciting development. I’ll keep you in the loop with what happens, but at the moment it’s in its final stages of trials and all the data is locked behind a wall of non-disclosure agreements.I wanted to personally thank everyone for helping us by completing our recent surveys into the impact of the COVID-19 pandemic. The number of completions was staggering, and it was the largest response to a piece of survey work by any PH organisation this side of the Atlantic. I was really heartened too by the response we received from those who care for patients, whether that be partners, other family members or parents. I know that the findings will truly influence the world of PH that we live in, from how you interact with healthcare to how we as a charity support you. I hope to keep you informed with the steps we’ve taken in this column each issue. Finally, work is well underway to prepare for PH Awareness Week in November. You can find out how to get involved opposite, and we’re really looking forward to coming together with you all to spread the word about this rare disease. This is a brief overview of just some of the work that’s been going on recently. You’ll find details of other PHA UK projects throughout this magazine, and of course, we’ll keep you updated via our e-newsletters and social media channels too.