Chairman's Message

Mark K 2Chairman's Message

Welcome one and all.

Lots of ongoing prodigious reading of all things COVID-19 in particular in response to inquiries relating to the current COVID vaccines and potential side effects for people living with GBS/CIDP and other auto-immune, immuno-compromised conditions.

The advice I have at present is watch this space.

With new vaccines and the current batch have been developed and rolled out in record breaking time, it is always best practice to use sample groups who are fit and healthy adults and the trials have been mainly focussed on these types of groups.

Makes sense as they are most likely to withstand any side effects that may develop.

Once these groups have gone through the trials then the vaccines are rolled out more widely and assessed.

High risk groups are generally left till the end to help ensure as many potential concerns are assessed and weighted.

Due to the COVID-19 emergency impacting many nations, the supply of vaccines is nowhere near enough for mass vaccination and supply will continue to be a key concern moving forward.

As such, the distribution will be triaged on a needs basis, front line and most vulnerable generally first.

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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


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