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Latest update from Taysha

We are delighted to be able to share the latest update from the Taysha gene therapy programme. Highlights include the first person who received the higher dose has had no serious adverse side effects, they have the go ahead to dose the second patient with the higher dose and agreement reached to expand the trial […]

Latest Update from Taysha

In the latest update published today we learn that there have been no serious adverse effects from the treatment in both the adult and paediatric trials so far. Both groups are reporting improvements in seizures, motor skills, communication/socialisation and autonomic dysfunction from parent carers and clinicians view points. A further update will be shared later […]

Latest update from Taysha

Taysha today shared updates on their REVEAL Adolescent and Adult Study. Here is the letter to the community. Also read their press release though as there is much more detail there about the improvements seen across a number of different symptom areas.

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 […]

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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