Around the World with Alstrom #AlstromGlobal

Around the World with Alstrom #AlstromGlobal

Date: 02 May, 2019  No Comments

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).

The photos above show 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.

ASUK Chief Executive Ann, sharing her thoughts and photos from the event;

‘A huge thank you to all of you who whole heartedly threw yourselves into the challenge when I asked ‘What are your key learning points from the conference?

In pictures and words- you had to be there to get that joke-here are the results from your creativity and resourcefulness! I hope you enjoyed it as much as me and the audience! You all deserve a standing ovation!


End of the day treat for Lexi and me!

I look forward to seeing you next time.’

Best for now


The full conference programme can be downloaded here

Further photos and information about the event will be published in your Summer newsletter.
Please contact Catherine Lewis by email if you would like to be added to our mailing list.

Remember to use #AlstromGlobal so we can raise awareness together!