Venue: Sir Christopher Wren Hotel, Thames Street, Windsor, Berkshire, SL4 1PX
Invite only!
For more information please get in touch with Stephanie@thesnowfoundation.org
Dr. Giulio Frontino and Dr. Maurizio Delvecchio of IRCCS San Raffaele Hospital, Milan, Italy. Unified Care for Diverse Challenges: Crafting National Guidelines for WS from Diagnosis to Care. You can listen to the presentation by following the link provided. https://youtu.be/PssLjWZgsFE
Head to the link to listen to it now. https://youtu.be/zQ-WrsgEi3o
Dr. Fumihiko Urano’s research updates along with Amylyx Pharmaceuticals’ update on their ongoing clinical trial involving AMX0035. It’s an incredible chance to learn more about the latest advancements in this field. Listen to the updates by clicking on the link provided: https://youtu.be/WCUNVi90EGo
Dr. Giulio Frontino and Dr. Maurizio Delvecchio discuss crafting national guidelines for the diagnosis and care of individuals with Williams Syndrome. You can listen to their presentation by following the link provided: https://youtu.be/PssLjWZgsFE
Tim Barrett update for Winter TreatWolfram newsletter
Dear friends and colleagues,
I hope everyone is keeping OK and managed to enjoy at least some good weather this Summer.
We are getting to the end of the TREATWOLFRAM trial, and the last participants will be having their last visits this October. We then hope to collect all outstanding data from study sites by the end of the year. The Clinical Trials Unit will then ‘lock’ the database so that our statistician can do the analysis. We expect to be told whether the treatment is effective or not, by the end of March or April 2025. As soon as I am told the results, I will write a report to our funder, the UK Medical Research Council; and I will of course share results through Wolfram Syndrome UK. Our trials unit team, Amy Lamb, Lewis James, Victoria Homer and Darren Barton, are working hard to make sure all the information that participants have kindly provided, will be ready to be analysed when the trial ends in October 2024.
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