
PKD Australia - Latest Update
ADPKD in 2021 Webinar - Review
Last Week RSA hosted a successful webinar focusing on ADPKD in 2021 – how we got here, what we have done, and what is on the horizon presented by Professor Andrew Mallett which highlighted the advancing field of research and translation into best practice care that is creating hope for people with ADPKD. Patient, Janice Creenaune shared her lived experience with PKD particularly that until connecting with PKD Australia she had never met anyone with PKD who was not a relative of hers.
By listening to patients we have learnt that:
- PKD is not just a disease of the kidneys
- PKD is a “lonely" disease - people with PKD rarely talk about the disease even with close friends
- there are some common symptoms while other symptoms are individual
- symptoms are more severe in some people and less so in others
- there is often a huge emotional burden attached to PKD
- PKD can be different within families and between families
Robert Gardos, chair of PKD Australia facilitated the meeting and highlighted how important it is for people with PKD and their carers to be aware of PKD Australia www.pkdaustralia.org, a source of the latest reliable information, patient blogs, community news and to learn about research opportunities and clinical trials.
Webinar recording available here...

Webinar: Therapeutic Horizons for PKD
Do you have questions about the treatment pipeline for PKD? Are you interested in clinical trials?
It has been nearly two years since the first drug to treat ADPKD, JINARC® (Tolvaptan) was made available on the Pharmaceutical Benefits Scheme (PBS) and now there are more treatments than ever being investigated for PKD.
This free public seminar presented by Professor Carmel Hawley and hosted by PKD Australia will provide updated information and answer your questions on the therapeutic horizons for PKD.
Disclaimer: the information presented in this webinar is of a general nature and should not be taken as specific medical advice. You are encouraged to discuss any matters of concern specific to you or your family with your own medical professional.
Date: Tuesday, 25 May
Time: 7pm (AEST)
Speaker: Professor Carmel Hawley
Carmel Hawley MBBS, FRACP, M.Med.Sci, is a Senior Staff Specialist and Director of Haemodialysis Services at Princess Alexandra Hospital. In addition, she is an Associate Professor (A/P) of Medicine at the School of Medicine, University of Queensland and current (inaugural) Chair for the Australasian Kidney Trials network (AKTN) formed in 2005. Under A/P Hawley’s stewardship, AKTN’s research output is now recognised internationally for its quality and impact. This has driven major advances in the evidence base, that directly informs care and outcomes for people living with chronic kidney disease. A/P Hawley also holds a Master’s degree in Biostatistics, has expertise in trial management, methodology, design and conduct. She is currently involved in numerous industry-led and/or investigator initiated international and national clinical trials as either a Principal or Associate Investigator, providing leadership and direction to emerging early and mid-career researchers.
Everyone is welcome! Please encourage your friends, family or medical connections to join PKD Australia.
Registration...
After registering, you will receive a confirmation email containing information about joining the webinar.

Kidney Health Australia - Latest Update
COVID-19 Vaccine Update
As part of the ANZSN COVID-19 working group, Kidney Health Australia (KHA) are helping to ensure the kidney community are safe during this pandemic. KHA recommend that people with kidney disease get vaccinated. It is advised that people speak with their treating doctor about the COVID-19 vaccine and what will be best for their health.
KHA support the following information and recommendations for people living with kidney disease as made by the COVID-19 National Transplantation and Donation Rapid Response Taskforce, read here.

Updated resource – An Introduction to Peritoneal Dialysis
Check out the newly updated consumer booklet, An introduction to Peritoneal Dialysis. You can order the booklet via kidney.org.au/shop or download a copy kidney.org.au/resources.
Contact Resources@kidney.org.au for bulk orders and more information.
Keep an eye out for more KHA "Introduction to" booklet series updates.

Upcoming Webinar
Chronic Kidney Disease & Acute Kidney Injury
Tuesday 18 May, 2021 @7.30pm AEST
Dr Karen Dwyer, Clinical Director, Kidney Health Australia
KHA webinars are available for free and suitable for Health Professionals. You can also access past webinars here.

Kidney Health New Zealand - Latest Update
Kidney Health New Zealand supported the setup of a donor support group exactly a year ago. Kidney Donor Whanau.
Kidney Donor Whanau can provide face to face, online or phone connection to another donor, or someone that considers donating. The support network is also a home for donors’ stories and to feature upcoming events like Q&As with medical professionals and the opportunity to hear the journeys of donors and their recipients first-hand. The support network is backed by Kidney Health New Zealand and medical professionals. This support groups is getting stronger and has been proven very successful.
For more information and to watch: https://www.kidney.health.nz/Patient-Support/Kidney-Donor-Whanau/
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Please take a moment.... CommuniquePlus readers are asked to take a moment to read the sponsor message below. The RSA could not provide the educational opportunities we do without the support of our sponsors. This is our opportunity to support them, so please read the message below and click through to more information on the PHILIPS website. Thank you.
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