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Posted on Tuesday, April 20 2021

Consumer Research Survey - IVIg
If you would like to assist with the development of future resources for this valuable program, we are looking for people to share their experience of immunoglobulin treatments. Carers are also welcome to participate.
NPS MedicineWise is looking for people who have been prescribed immunoglobulins (antibodies) as part of their treatment to take part in a short survey online and/or an in-depth interview over the phone.
The aim is to help us understand what types of information, tools and resources are helpful for people along the patient journey.
The information will be used to develop resources for consumers as part of a national program about immunoglobulins.
The survey is to be completed online and will take about 10-15 minutes. You can access the survey here which went live on 19 April and be available till the 14 May.
The in-depth interview would be completed over the phone / Zoom and take between 30-45 minutes. There is a $50 gift card incentive for participation. Interviews will be available for the weeks of 19 April and 26 April. There are limited places available but to express your interest please email Angela Romero
If you would like to take part in this project, or need further information, please contact Lia Mahony or phone (02) 8202 7105.

The MAA Board keep very busy, as usual, engaging with Federal Government Departments, The Medical Advisory Board, Industry Stakeholders and Researchers. With this edition of the MGAQ newsletter there are two opportunities requiring membership engagement. 

  • As peak consumers of IVIG, the Myasthenia Community has been asked to participate in a survey regarding experiences when treated with IVIg. The goal of this research is to produce a flier for patients attending clinics which administer IVIg therapy. This is important work in making the experience less daunting. I do hope that our Community can respond strongly. 
  • As part of an on-going focus to make life with MG a little easier, we have been providing feedback for some months now, to a group who are keen to utilise technology and support people with neurological conditions. This group has developed an App, Careforia, to aid people in recording the details and tracking progress with their MG life experiences. It is ready for your use. Do check it out if you enjoy utilising technology.

More news next month. Keep well. 

Susan White, Chairperson

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