Bringing the patient and carer voice to MDS 

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As Chairs of the MDS Patient and Carer Committee, we’re pleased to share an update on the development of the Patient and Carer Program — an initiative designed to strengthen the connection between the International Parkinson and Movement Disorder Society (MDS) and the individuals and families affected by movement disorders. 

In working with patients and studying movement disorders, we are continually reminded that those living with movement disorders, and those who care for them, have insights that are indispensable to advancing care, education, and research. Their lived experiences provide essential context for understanding how movement disorders affect daily life and how scientific progress translates into meaningful outcomes. The Patient and Carer Program was established to ensure that these perspectives are represented and integrated within the Society’s ongoing work. 

Through this initiative, patients and carers will have new opportunities to engage with MDS — sharing their experiences and contributing their perspectives to projects and initiatives within the Society. The program is designed to create a welcoming and structured avenue for involvement, grounded in respect, collaboration, and shared purpose. 

A key part of this initiative is the development of an online patient and carer interest form, which will serve as the main entry point for individuals who wish to connect with MDS. Through this form, patients and carers will be able to indicate their areas of interest, share relevant background information, and express how they would like to be involved. This will help MDS build meaningful connections with the global patient and carer community and ensure that engagement opportunities are accessible and well-coordinated. 

With the launch of the online sign-up form, we are eager to begin welcoming patients and carers to engage more directly with MDS. Patients and carers who would like to connect with MDS and hear about future opportunities for involvement can complete the patient and carer interest form. In the coming months, our focus will be on creating an enduring platform for dialogue between our professional community and those affected by movement disorders. 

We look forward to continuing this work and to building a lasting platform for partnership — one that strengthens the Society’s mission and ensures that the voices of patients and carers remain at the heart of progress in the field of movement disorders. 

Learn more about the MDS's patient and carer initiative: 

Sign-up details