PCD NEWS

Survey on the effect of COVID-19 on people with PCD


We know little about how the new coronavirus disease (COVID-19) affects people with Primary Ciliary Dyskinesia (PCD). Therefore, PCD support groups all over the world asked for a research study which was set up in collaboration with a research team at the Institute for Social and Preventative Medicine (ISPM) at the University of Bern, Switzerland.

COVID-19 infections in people with PCD is a research study that uses anonymous online questionnaires to assess how many people with PCD get COVID-19 and what happens if they catch COVID-19. It is a longitudinal study, so people can join anytime.

 

Participants receive a detailed questionnaire at the start, and then short weekly questionnaires to monitor the progression of symptoms.

 

Ideally, people will join before they have a COVID-19 infection, but can also join at a later time.
To ensure that we address all relevant areas affecting people with PCD, participants are welcome to suggest topics to include in our questionnaires.

 

Fill out our survey on the effect of COVID-19 on people with PCD


PCD Wine Drive


PCD Australia (Primary Ciliary Dyskinesia) raises money to advocate on behalf of the PCD community for access to the best available care. We initiate and encourage much needed medical research into the early diagnosis and treatment managemet of PCD to help improve the lives of people living with PCD, their families and Carers.

Prices Start at $55.00 for a Pre Mix of Prosecco N.V, Shiraz 2019 and Pinot Grigio 2019 

Buy three or or a dozen the choice is yours

Click on the link Below to support us raise much needed funds for a Standards of Care in Australia for PCD. 

http://labelmywine.com.au/winedrives/primaryciliarydyskinesia/


AGM 2020 Zoom Meeting


Young Lungs Program


Introducing the community groups was Margaret Polacska, President of CDH Australia and Catherine Kruljac, President of PCD Australia. We look forward to ongoing participation in the Young Lungs program to advance services for PCD families.

 


The Lung Foundation Australia


PCD Australia was proud to take part in the Lung Foundation Australia’s Young Lungs Program community consultation held in Sydney on Rare Diseases Day on Saturday 28 Feb. The aim of the program is to identify unmet needs within the rare diseases community and develop a national Rare Diseases Plan.

Presenters at the consultation were Prof Adam Jaffe, Chair of Young Lungs and Consultant in Respiratory Medicine and Associate Director of Research, Sydney Children's Hospitals Network (Randwick), Nigel McPaul, Group Project Manager - Lung Foundation Australia and Ann Getty’s, Director – chILD Foundation USA. Dr Lucy Morgan was also present who is a physician at Concord Hospital for PCD Adults.

 


 

PCD EVENTS




PCD Annual General Meeting - 20 August 2020


Hi there,

Are you looking for an exciting and rewarding new challenge?

The PCD Australia committee could be for you! We are on the hunt for bright, enthusiastic and passionate committee members to help us achieve our strategic goals, and generate awareness for PCD through a number of exciting roles!

Think you are up to the challenge?

Join us at our 2020 Annual General Meeting to learn more!

Find out how below!

Positions we are currently recruiting for

State representatives 
Grants writer
Administration assistant
Communications assistant (facebook, Instagram Linkedin)

To participate and vote you need to be a member of PCD Australia (this is not the closed group) go to register

https://pcdaustralia.org.au/register.php


You are invited to a Zoom meeting.
When: Aug 20, 2020 08:00 PM Canberra, Melbourne, Sydney

Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZYtf-utqjMpG9ylnMwg5jl2ePPlu9Ko7sVL

After registering, you will receive a confirmation email containing information about joining the meeting.


AGM Special Guests


We are very pleased to announce that Associate Professor Lucy Morgan and Professor Phil Robinson will be joining our AGM this Thursday.
Lucy and Phil are leading respiratory and sleep physicians in Australia and great advocates for PCD.
The AGM will be held via Zoom on Thursday night at 8pm. Hear about our work towards a Standard of Care, updates from our President and it will also be an opportunity to ask our Directors, our specialists any questions you might have.
 

To register for the AGM, please click on the link below.

Enter your first and last name as well as your email address.

Once registered you will receive the zoom meeting link.

If you have any difficulties registering or accessing, comment below and we will contact you to assist.

You are invited to a Zoom meeting.
When: Aug 20, 2020 08:00 PM Canberra, Melbourne, Sydney

Register in advance for this meeting:
https://us02web.zoom.us/…/tZYtf-utqjMpG9ylnMwg5jl2ePPlu9Ko7…

After registering, you will receive a confirmation email containing information about joining the meeting.

Looking forward to seeing you there!