It is Sorsha’s last week with us at the AKU Society. Replacing her is a familiar face many of you already know! Eve is currently our Admin Assistant, but will be stepping in to Sorsha’s shoes at the end of the week as our new Online Communications Officer. In today’s blog Sorsha says goodbye, and we welcome Eve to her new role.

Farewell from Sorsha

I have really enjoyed being your Online Communications Officer for the past year and a half, and will be very sad to leave. I have learnt so much fromthe AKU Society Team, and from all of our wonderful patients. I would like to say thank you to everyone I have worked with, met, and befriended during my time here.

I am moving on to go travelling for 3 months around South East Asia- something I have wanted to do for a while. When the opportunity came up to travel with a friend, I couldn’t say no!

What are you most proud of?

During my time at the AKU Society I have worked on many projects I am proud of. Developing our elearning module with RCGP was a particularly exciting project, as it has the potential to raise so much awareness among healthcare professionals, and change the lives of many future patients. I am also incredibly proud of leading our crowdfunding campaign earlier this year, and raising over $35,000 to support patients attending our SOFIA study.

What will you miss?

I am going to miss writing and editing the weekly blog, and posting interesting news to Twitter and Facebook on a daily basis. I am also going to miss meeting patients- whether that be online in the forums, over the phone, or in person at workshops and the hospital.

Thank you to all the patients I have interviewed and interrogated for campaign videos, articles, and blogs. I am particularly thankful to everyone who got involved in our last crowdfunding campaign. The campaign just couldn’t have been a success without so many of you spreading the word, running your own fundraising events, and writing updates for us.

And of course I will miss all my colleagues at the AKU Society! Good luck, and I will make sure I stay in touch.

A Familiar Face: Eve

Over the last year I have been your Admin Assistant. During this time I have met and learnt from many AKU patients and experts, who have taught me great deal about the disease and allowed me to understand the many challenges AKU patients face.

I have also supported patients enrolled in our DevelopAKUre trial, which has given me the opportunity to communicate and work with AKU patients all over Europe. I have really enjoyed my role, but am looking forward to new challenges as the Online Communications Officer.

What attracted you to this new role?

Working at The AKU Society has taught me that online communication is extremely important within the rare disease community. Meeting and communicating with rare disease patients and patient groups has made me aware of the isolation patients tend to feel due to the rarity of their condition. I have seen first-hand how these online communities have allowed patients to share experiences, engage with other patients, and really feel part of a community. This new role is a great opportunity to support patients from the UK and around the world to build a strong community and reduce this sense of isolation.

What are you most looking forward to?
I am really looking forward to engaging patients online and motivating them to become active members of the AKU community. I will do this by keeping patients informed on rare disease news and posting regular blogs, detailing the fantastic work The AKU Society is involved in. I also am excited to encourage patients to engage through online communities and support them through this process. I hope by keeping patients engaged online, our AKU patient group will continue to grow and develop.

What would you most like to achieve in this role?

Patients have always been at the forefront of what The AKU Society does, and my ultimate goal is for patients to feel supported and part of a strong community. I am looking forward to getting feedback on what patients have found useful in the past and what they would like more of in the future. I will be organising special online events to engage patients, and offer them a range of support.

I also want to continue to raise awareness of AKU, particularly among health professionals and patient groups. I have learnt a great deal about rare diseases over the past year, and I believe it is extremely important for patient groups to work together to stress the importance of rare disease research.