News
Latest news
Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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Update from Neurogene Clinical Trial
Good news from Neurogene as they progress their gene therapy trial to the next stages. You can read their letter to the community here.
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Latest Update on Taysha Gene Therapy
You can read the full article below:
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A plain language summary of results from the LAVENDER study: trofinetide treatment for Rett syndrome
Many thanks to Future Rare Diseases for sharing this publication with us. You can read the full paper here.
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Marking Rare Disease Day 2024
To celebrate Rare Disease Day 2024 one of our board members Bojana Milanov was interviewed by NORBS – the National Organisation for Rare Diseases of Serbia. Here we share her story. Many thanks Bojana. A rare disease means any disease that occurs in less than 5 people per 10,000 citizens, but a number of rare…
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Mum in Zurich Shares her Inspirational Story
Becky Jenner, President, had the pleasure of meeting Julia Ramlogan a couple of years ago when Julia launched her new organisation to raise awareness and help progress towards a cure. We are delighted to share Julia’s story and progress with her mission. https://www.montana-zug.ch/en/news/january-2024/parent-feature-interview-with-a-super-mom-julia-ramlogan
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Study about Males with Rett Syndrome
Dr Tim Benke, Medical Director of the Rett Center of Excellence at Colorado Children’s Hospital is the lead Principal Investigator in a study that is seeking to understand the lived experience of Males with Rett syndrome via their parent report. He would love to have responses from parents in Europe COMIRB: 23-0075PI: Dr. Tim BenkeV.…
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Jan 24 Update from Taysha
Official press release from Taysha giving more detail of their REVEAL paediatric gene therapy trial with sites in the US and UK.
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Taysha Gene Therapy Trial Update
Taysha announce details of their REVEAL paediatric study in the US which is now recruiting patients.
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Taysha expand age group in gene therapy trial in Canada to 12+ years.
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9th World Rett Syndrome Congress
2nd to 5th October 2024 in Queensland, Australia The Rett Syndrome Association of Australia are delighted to announce that after a couple of postponements due to the pandemic the congress is very much back on! We will keep you informed here as updates are shared but also check out their website . The programme is…
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