Neurogene has announced key progress on NGN-401, its gene therapy for Rett syndrome:

A regulatory update on trial plans is expected in the first half of 2025
More interim clinical data will be shared later in the year
NGN-401 has received PRIME designation from the European Medicines Agency, recognizing its potential to address an urgent medical need

- Full press release link for Fourth Quarter and Full Year 2024 Financial Results and Highlights Recent Updates -

Disability Benefit Cuts!

The government announcements may have left you feeling uncertain and concerned about what lies ahead. Rett UK are working with the Disabled Children's Partnership and other organisations to ensure that our voices are heard.

To help clarify the situation, we’ve outlined the key changes:

The government has announced plans to cut Universal Credit for some disabled people. However, no one’s support will change until their next reassessment. If these plans go ahead, many disabled people could receive significantly less support.

Accessing PIP will become more difficult, though not everyone will be affected.
There’s no immediate need to worry—these changes will take time to come into effect, and not everyone will be impacted.

Some changes will require new laws, and the government will also seek public feedback before implementing certain measures. This means we have an opportunity to voice our concerns and push for change.

You can contact your MP using the handy template sense have shared to express your thoughts on these changes: https://action.sense.org.uk/page/167765/action/1?ea.tracking.id=fb-org&fbclid=IwY2xjawJIxhhleHRuA2FlbQIxMAABHS33nQrgjTnwkY2QacqQ3PrORzY5jLkxPqhkN9vjxuKvyvycAJwj32YrZQ_aem_qXmJPGdc2_WRmNQDS2PhtA

We understand this is a worrying time. If you're feeling anxious or need someone to talk to, you can call us on 01582 798911