Families from across Wales will be gathering at the Assembly today to demand NHS funding for rare muscular conditions.
The Welsh Government says the NHS is facing "significant" financial challenges.
In a recent meeting with the Muscular Dystrophy Campaign to discuss the Welsh Neuromuscular Network Vision Document, the Health Minister referred to the significant challenges facing the NHS in Wales and that these challenges would continue for some time to come.
While he expressed his support for their work, the Health Minister also acknowledged any developments in services would have to come about from new ways of working as it is unlikely any additional financial resource will be available.
We understand that patients with a long term neurological conditions such as muscular dystrophy need access to complex and well co-ordinated services. This is why we commenced last week a consultation on a draft Neurological Conditions Delivery Plan. We urge the Campaign and indeed all individuals with an interest in neurological conditions to contribute."