Climb would like to say a massive thank you to all those families and professionals who joined us on the 4th June for our first Urea Cycle Disorder event.
We had over 50 people join us for a really interesting day which saw the launch of the RareConnect network, updates on a potential new drug from Horizon, navigating the NICE Highly Specialised Technologies (HST) Process and an afternoon workshop from Breath DX gathering views on their ammonia breath test prototype.
Climb is delighted to be fronting the RareConnect platform for Urea Cycle Disorders and since it’s launch on the 4th, we have seen a steady increase in the numbers who are joining. We will be promoting this more in the coming weeks and we hope to target UCD patients and families worldwide to join this exciting networking opportunity. Climb would like to say Thank You to Alex Aebischer and to Emma Peterson who have agreed to be moderators on the network. At the meeting Alex gave us a truly wonderful insight into her experiences as a parent and gave some real positive advice to other parents.
Horizon kindly sponsored the meeting and Kathryn came along from the company to give us an insight into their new drug RAVICTI and told us a bit more about the trials. RAVICTI will soon be going through the NICE HST process which led us neatly onto our third presentation by Nick Meade from Genetic Alliance. He gave an overview of the difficult process and told us about the important work that Genetic Alliance does too.
Following a really nice lunch which gave some nice networking opportunities and saw some new friendships being made, we moved on the Breath DX workshop facilitated by Professor David Evans. Professor Tony Killard gave a n over view of the potential new technology and with the help of Professor Julian Hamilton-Shield and Termeh Ahmadraji , we held a great workshop discussing the views of parents on a variety of topics. These included the patient / parent information on the technology, views on the product itself and how easy it would be to use, how it worked etc, and finally further workshops and communication with families and how they may like to be further involved.
We were delighted with how the day went and we got some great feedback too. We had a great day putting names to faces and meeting everyone. Thank you so much for coming along. We’re excited about the future for our UCD families and are looking forward to working with them more to improve services.
A final thank you to Scalliwags Mobile Creche Services who provided a lovely relaxed space and care for the younger children.