Chairman's Message

Chairman's Message

Welcome one and all.  As I write I note it is 1st September and it is Spring, my favourite season.  However, as we approach 6 months of some form of COVID-19Mark K 2 lockdown/restrictions in Australia it has been an environment different to any we have experienced before.

As a person living with two auto-immune conditions, CIDP and Ulcerative Colitis, I am both immune supressed and immune modulated, self-isolating and working from home, like so many others.  Whilst I am generally extra cautious during the winter months to avoid people exhibiting cold and flu symptoms and I have a flu vaccination each year as early as possible, after clearance advice from my specialist, it has been extremely challenging to go out for just a short walk in nearby Parramatta Park and avoid others not reciprocating physical distancing nor wearing masks.

Why is that important?  Well, I cannot go to my gym and have been granted a hold on my membership until 31st December 2020, so I am missing a key segment of my CIDP/UC fitness strategy to stay as healthy as possible to provide a solid foundation to help see me through any flares in either condition. 

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Latest News

IMMUNOGLOBULIN FOCUS GROUP

on . Posted in News

Have you or someone you care for used an Immunoglobulin Product?

 The key conditions we are interested in are:

  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • -       Myasthenia gravis
  • Other neurological conditions receiving immunoglobulin treatments.

NPS MedicineWise is looking for people or carers with the above conditions to attend a focus group. The aim of the focus group is to help us understand what types of information, tools and resources are helpful for people with these conditions.

 We are looking for people from diverse backgrounds, all ages, both new Ig users and experienced users

 We are looking for people to participate in video / telephone conference and to share their experience of Ig treatments

 Both current and former (in the past 3 years) Ig users of intravenous and sub-cutaneous are welcome.

 Those who take part will be compensated for their time.

If you would like to take part, please contact Lia Mahony This email address is being protected from spambots. You need JavaScript enabled to view it. 02 8202 7105

COVID-19 UPDATE

As the news and reaction to the COVID-19 virus changes daily, as you would understand, your association is not able to provide the latest news and advice. However, we can advise members where to go to continue to receive the latest updates rather than follow the story as covered by the media, for daily updates we suggest you visit the NSW Health https://www.health.nsw.gov.au/Infectious/diseases/Pages/coronavirus.aspx.