w o d n i Ato owur world ector of ir D , n o t y la C n By Shau e PHA UK h t t a t r o p p u S Membership
ow me, I’ve been working "For those that don’t kn ost ten years now, helping here at the PHA UK for alm rd, keep all the plates to drive the charity forwa we ensure we are doing all spinning, and, of course, ot mmunity. Here’s a snapsh can to support our PH co … er the last few months what’s been going on ov e making our website th We’ve been working on in following a huge spike best it can possibly be, 19 pandemic. I’m very traffic during the COVIDle turn to our site as a proud that so many peop ation, and the increase in source of trusted inform to look at how we can visitors has prompted us ce even better. Following make our online presen w.phauk.org now has a a complete overhaul, ww and refreshed content new look, new navigation . d what you’re looking for – making it easier to fin n, the new ‘suppor t’ sectio One of the highlights is r suppor tive tools and a central area bringing ou e we’re pretty proud of th resources together, and n too. improved search functio g a new and improved And we’ll soon be addin e line shop – so keep an ey clothing range to our on ch g designs! Do get in tou out for some eye-catchin s. ge k on these website chan if you have any feedbac ernet, we’ve seen a bit On the subject of the int ug forums about a new dr of chatter on our online ought it would be called sotatercept, so I th ht on this therapy. helpful to shed some lig st in class’ drug that is Sotatercept is a new ‘fir -based pharmaceutical being developed by a US at n. ‘First in class’ means th company called Accelero y, a completely dif ferent wa this therapy treats PH in ing development. so it’s potentially an excit
"Welcome to our n ew regular feature, where I’ll be you on what’s bee updating n inside your charity going on ."
t with what happens, bu I’ll keep you in the loop all final stages of trials and at the moment it’s in its re d a wall of non-disclosu the data is locked behin agreements. ank everyone for helping I wanted to personally th pact ent surveys into the im us by completing our rec ic. of the COVID-19 pandem d it ions was staggering, an The number of complet rk e to a piece of survey wo was the largest respons this side of the Atlantic. by any PH organisation o by the response we I was really hear tened to er o care for patients, wheth received from those wh ts. ren family members or pa that be partners, other will truly influence the I know that the findings ct in, from how you intera world of PH that we live you. we as a charity suppor t with healthcare to how ed with the steps we’ve I hope to keep you inform ch issue. taken in this column ea rway to prepare for Finally, work is well unde November. You can find PH Awareness Week in opposite, and we’re really out how to get involved to ng together with you all looking forward to comi this rare disease. spread the word about of just some of the work This is a brief overview of ently. You’ll find details that’s been going on rec e, roughout this magazin other PHA UK projects th you updated via our and of course, we’ll keep l media channels too. e-newsletters and socia AUTUMN 2021 emphasis 15
