What is all about Ataxia ; Its online information and patient engagement done differently.
All About Ataxia is an information seminar that gives anyone affected by ataxia (patients, carers/family members) information about the clinical and practical implications of living with ataxia. They explain what is known about ataxia, how it may progress, and what can be done to mitigate its effects.
The problem with online information content is that it is consumed and then the user continues their information journey to other sources…. sometimes the sources are valid sometimes not. Leading to a spiral that could lead to more questions than answers.
The goal of the All about ataxia seminar is to come together and watch curated content, we then get to talk and exchange about what was just viewed!
We want to create strong connections between patients and caregivers present allowing them to support each other and share their experiences.
We want to create a welcoming space that reduces the feelings of isolation.
We want the patient to be better equipped and have the tools to be more involved in their own healthcare journey, empowering them to take charge of their treatment and increasing their confidence in their ability to manage their condition.
We want also want to encourages the exchange of knowledge and best practices, which can lead to an improvement in the overall quality of life of participants.
Each video will be about (20 minutes) and we will cover these topics:
- Impacts and Progression of Ataxia
- Speech Therapy
- Physical Therapy and Occupational Therapy
- Research and Treatments
Click here to register and join waiting list for next seminar!