Rare Neuromuscular Diseases
Since our inception the Foundation has undertaken a number of initiatives and activities to promote the awareness of these debilitating diseases through activities, events and working with the research community.
Facts about Rare Neuromuscular Disease
People affected are challenged by delay in diagnosis, or are misdiagnosed. Many rare neuromuscular disease patients have difficulty in receiving the highest attainable standard of care. The Fred Liuzzi Foundation will continue to advocate the need to overcome common obstacles, the foundation’s role is to bridge this gap.
Information on rare neuromuscular diseases
There is a limited number of patients and a lack of relevant knowledge and expertise – the foundation is taking the appropriate steps to address the issues and build on the achievements to date; we seek to implement an integrated approach with all stakeholders including government in order to further improve the access to prevention, diagnosis and treatment both acute and post-acute for patients suffering from a Rare Neuromuscular Disease and services available to carers and families.
- The lack of appropriate health policies for Rare Neuromuscular Disease translates into delayed diagnosis and difficult access to care and services
- This results in family stress and physical, psychological and intellectual impairments, loss of confidence in the health care system; especially knowing that if diagnosed on time some Rare Neuromuscular Diseases are compatible with living a normal and healthy life
- Misdiagnosis and non-diagnosis are the main hurdles to improving life quality for Rare Neuromuscular Disease patients.
- Supporting effective and efficient action for Rare Neuromuscular Diseases by ensuring that we all support a seamless strategy