Jetting off to the Alstrom Syndrome International Conference in the USA!
ASUK Trustee, Alex Griffiths-Rayson and Chief Executive, Ann Chivers set-off on the 30th April 2019 to attend the Alstrom Syndrome International conference in Texas, USA. The event was spread over 5 days from the 2nd – 6th May 2019 and included family and professional seminars and workshops, as well as lots of fun!!
It was a great opportunity for people affected from all over the world to come together and share their experiences and meet other people affected by this ultra rare condition.
We were very excited to be taking part, presenting the journey of ASUK and how we can work together to continue the great work going on globally through support, awareness and research.
Ann and Alex enjoyed catching up with families, friends and professionals – who all had one thing in mind; improving the lives of people affected by Alstrom Syndrome.
Photo: Ann (on the right) and Irene Aquino, representative from Rhythm Pharmaceuticals (on left).
Photo (above top left) of Murray Stewart from Rhythm Pharmaceuticals presenting about the AS clinical trials they have been conducting on the effects of Setmelanotide on weight and hunger. The photos above also show ASUK Trustee, Alex and ASUK Chief Executive Ann presenting the charities journey and the advancement of research, health clinics, support and awareness in the UK into this ultra rare condition.
The full conference programme can be downloaded here
Further photos and information about the event will be published in the May e-news and in our Summer newsletter. Can’t wait to hear all about it!!
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Remember to use #AlstromGlobal so we can raise awareness together!