Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to provide additional support for families affected by members with Duchenne muscular dystrophy.

The Government is committed to improving the lives of those living with rare diseases, such as Duchenne Muscular Dystrophy. Under the England Rare Diseases Action Plan 2025, we remain focused on delivering against the four key priorities set out in the UK Rare Diseases Framework. The 2025 England Rare Diseases Action Plan was published on 28 February 2025 and is available at the following link:

https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2025

We know that people living with rare conditions, and their families and carers, often struggle to access mental health and psychological support. Mental health services should be offered based on need and should not exclude anyone because of a particular physical health or neurological diagnosis. The NHS Genomics Education Programme has this year published new resources on rare diseases and mental health, aimed at healthcare professionals. It has also developed a communications tool to help healthcare professionals with sensitive conversations, to ensure that patients and families feel supported throughout the diagnosis of a rare condition.

Many people struggle to access reliable information on rare diseases, and we recognise the important role patient support groups can play in developing reliable and easy to access information. In this year’s action plan we have set out the steps we are taking to support organisations to get the information they produce accredited under the Patient Information Forum’s trusted information creator scheme.

To enhance specialist care, NHS England is supporting multi-system disorder clinics to reduce appointments and ease care coordination for families.