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UK MND charities focus on bring new treatments to patients in 2024

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The three main UK charities supporting those affected by motor neurone disease (MND) have set out their priorities for 2024, with a focus on getting new treatments to patients.

The MND Association, My Name’5 Doddie Foundation and MND Scotland say they will work together this year to combine voices, knowledge and expertise in a bid to get proven treatments to people with MND ‘as soon as practically possible’.

For the first time there is a possibility of new treatments for MND emerging over the coming years.

In a press release issued on 9 January, 2024 the charities announced how they would be focusing their efforts in order to make this a reality for those affected by the condition in the UK.

The charities’ priority activities include building a ‘comprehensive database’ of new medicines and repurposed drugs currently being researched in clinical trials, which will be regularly shared with regulators, healthcare providers, other Government agencies and relevant charity coalitions.

Alongside this, they will continue to work with clinicians and healthcare providers to prepare for the ‘expedient uptake of new and/or repurposed medicines’ (eg tofersen, interleukin-2) once there is sufficient evidence of efficacy and safety.

Activities will also continue to ensure that people with MND are at the heart of regulatory and approval processes (for example Health Technology Appraisals) when decisions are made about the value and affordability of new medicines, by building collaborative relationships with stakeholders. They aim to collaborate with people with MND, neurologists, Health Technology Appraisal experts and others to ensure this work is informed and credible.

“A successful outcome of this work will be timely and equitable access to proven and effective treatments for people living with MND,” the charities say in a news update on the MND Association website.

“We are driven by this joint ambition, and by sharing knowledge, expertise and resources we hope to accelerate our progress.”

The MND community will kept informed of these activities throughout the year.

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