Congenital Myasthenic Syndrome (CMS) patients – please complete this MAA survey!

The MAA would like to hear from ALL Australians diagnosed with CMS. We need to capture your numbers (parents/guardians can respond on behalf of children). We also want to learn about your experiences here in Australia regarding accessing Ruzurgi/Amifampridine/3,4-DAP as a treatment option.
The supplier of Ruzurgi is working towards achieving PBS funding for CMS patients. This will be done via a Repurposing Application. The MAA have previously been successful with such an application, and we are keen to assist on this occasion. The MAA firmly believe that “equal access to treatments for Australians” should mean that CMS patients have funded access to this treatment should they want it.
In order to approach the Health Department with an appeal we need to present data about the current situation and show why this is creating an unmet need.
If you are diagnosed with CMS, or can pass this information onto anyone who is diagnosed with the condition, we need you to complete this short survey.
There is an opportunity at the completion of the survey to leave your contact details should you be willing to provide additional information, but this is optional.
The MAA express our sincere appreciation to everyone who completes the survey. We are always keen to support our ‘rare’ community. Your assistance will be a great help in this endeavour, and we thank the company for taking this important step.
Please call 1800 802 568 or email support@myastheniaalliance.org.au if you require additional information.