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PCD Australia

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24.01.2022 Well tomorrow is the start of PCD Australia, Uk and USA Awareness month - Over the next 31 days we will be sharing some facts about PCD and some stories. Please help us raise awareness and share with family and friends. # share #PCD #cure #cilia

24.01.2022 Great and Fun ways to do Physio . Take a look at this page for ideas to get the most important part of self care for everyone with PCD . A side note to be aware of - the following is stated on the page. I am not a physiotherapist, I’m a Mum.... The information and advice found on this page is NOT a substitute for medical advice of your doctor/physiotherapist who has specific knowledge on you/your child’s condition. Any drugs and dosages mentioned in comments may not be appropriate for your medical condition. Please consult your doctor. See more

23.01.2022 ABC Q & A had one of our PCD stars talking about COVID-19 - Dr Lucy Morgan . One of the interesting topics was how chronically ill respiratory patients had taken precautions to isolate and how they had coped so far. Great to see inspiring women lead the conversation and making sure that people were getting the correct information. Thank you for all the work you do !... Please take time to listen . https://youtu.be/cTXSbBM4jIw #qanda #abc

23.01.2022 Please make sure you check in on others . All might seem ok, but just ask the question. PCD is something we all deal with everyday and so at times we might not talk about it and how we are coping , but it’s ok to , if you are feeling stressed , worried or anxious , reach out !

22.01.2022 Happy Birthday to this amazing little princess Daisy who is turning 4 today . Dancing and princesses are her passion . Hope you have a wonderful day from all of your PCD Family . xx

21.01.2022 Happy Birthday goes out to Nathaniel - who turns 13 today . As stated by his father " May your bacon always be streaky, your Spotify playlist be curated by John Williams, your haircut Novak like and your conception of Godzilla beating King Kong in a death match on a mountain top be delusional." From all of us here in the PCD Community - Happy Birthday !!!

21.01.2022 Remember to register for the AGM this thursday and hear about the work we are doing for PCD Clients

21.01.2022 The National Disability Insurance Agency (NDIA) would like to hear from you regarding the changes they are making to the National Disability Insurance Scheme (N...DIS). The NDIA has released three public consultation papers and one report: 1. Consultation paper: access and eligibility policy for independent assessments 2. Consultation paper: planning policy for personalised budgets and plan flexibility 3. Consultation paper: supporting young children and their families early, to reach their full potential 4. The Early Childhood Early Intervention Reset Project consultation report Submissions for each public consultation paper are open until 10am ADST Tuesday 23 February 2021. Rare Voices Australia (RVA) will be lodging a submission to each public consultation paper. People living with a rare disease who are NDIS participants, as well as their families and carers, and rare disease organisation leaders may wish to do the same. RVA is currently developing our key messaging which will be aligned with the National Strategic Action Plan for Rare Diseases; our Position Statement to the Government’s Response to the Tune Report; and the report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. As always, we are able to provide advocacy mentorship to RVA Partner organisations. Click through to access the NDIA’s consultation paper and report: https://bit.ly/2V13rcy

20.01.2022 Please see the following video provided by the WHO on how to use a non-medical mask during COVID-19.

20.01.2022 Congratulations to Prof Anne Chang - who is leading a research project team called REPEAT , a research project for young people with PCD . Thank you for all your hard work you do . Well deserved ! Congratulations to Professor Anne Chang, the 2021 recipient of the Howard Williams Medal. The Howard Williams Medal is awarded to a person who has made an outstanding contribution to improving the health of children and young people in Australia and or NZ.... Anne is a senior staff specialist at the Queensland Children’s Hospital and is recognised for her research contributions to evidence-based management and clinical care in the areas of paediatric cough, asthma, bronchiectasis and Indigenous child lung health. Original works include the world’s first description of protracted bacterial bronchitis and international multicentre trials involving children with bronchiectasis. Anne is also the Professor of Child Health and Head of the Child Health Division, Menzies School of Health Research (Darwin) and an Adjunct Professor with Queensland University of Technology. She has been a NHMRC practitioner fellow since 2004 and has published more than 500 articles. Her major research interests are in improving the management of Indigenous health, cough and suppurative lung disease in children.

20.01.2022 We Would like to thank you for sharing our Facts about PCD. If you would like to help us don't hesitate to contact us Fact #31 #cure #moveforacure #pcdaustraliaoctoberawareness #pcd #lungs #pcdaustralia #bronchiectasis . www.pcdaustralia.org.au

19.01.2022 PCD Awareness Month Fact #30 #cure #moveforacure #pcdaustraliaoctoberawareness #pcd #lungs #pcdaustralia #bronchiectasis . www.pcdaustralia.org.au

18.01.2022 PCD Awareness Month Fact #3 #cure #moveforacure #pcdaustraliaoctoberawareness #pcd #lungs #pcdaustralia

18.01.2022 GSNV 5 DAYS TO WELLNESS NOV 16-20th What's planned for the GSNV's 5 Days of Wellness Week? They are looking forward to telling you about all the activities they have planned for our Genetic Support Group members within our 5 Days to Wellness being held November 16th-20th. ... They know that the need for connection is a human condition and for most of this year many of us have been presented with a number of restrictions as a result of Covid that have curtailed our interactions together . They have missed connecting in person but have loved keeping in touch through their chatroom, zoom meetings and phone calls. To say thank you for your support this year, to celebrate our launch of Care for Rare and some other surprises, they want to connect with you during Wellness Week. Follow their social media platforms in the lead up to the Nov 16th for information about our events and speakers. Some events have limited numbers so register your interest now to secure your place Register now . Places are limited for some events https://form.typeform.com/to/JiQeM7Ib

18.01.2022 October PCD Awareness Month Fact #1 #cure #moveforacure #pcdaustraliaoctoberawareness #pcd #lungs #pcdaustralia

16.01.2022 PCD Australia recently held its Annual General meeting . We have uploaded the recording of our virtual AGM from the 25 August plus the minutes of the meeting Thank you again to all those who attended and made this PCD AGM one to remember. We had 25 people on the call and a great conversation with our PCD specialists Assoc Prof Lucy Morgan, Prof Phil Robinson and Fiona Copeland who was the Chair person for the last 17 Years for PCD Family Support Group UK... If you would like any futher information on PCD Australia please dont hesitate to contact [email protected]

16.01.2022 Dear PCD Community We would like to invite you all to participate to the first network meeting of the BEAT-PCD ERS clinical research collaboration (CRC). The meeting is also open to patients and their families to register. The meeting will be adjacent to the ERS conference and it will also be held virtually this year on September 10th from 13:00 to 17:00 CET.... All members of the PCD community are welcome to participate so please forward this information to your colleagues (including early career researchers) and encourage them to join. You can find more information about the BEAT-PCD CRC as well as a preliminary agenda for this meeting at the BEAT-PCD website https://beat-pcd.squarespace.com/events To participate please register by August 31st following the link: https://www.eventbrite.co.uk/o/beat-pcd-ers-crc-30459216388 Registration is free of charge and is needed to ensure all technical details for the meeting. If you have any questions please contact Amelia or Myrona at: [email protected] and [email protected] We are excited to meet (virtually) with all of you in September! Kind regards, Amelia Shoemark and Myrona Goutaki, on behalf of the BEAT-PCD CRC management committee

15.01.2022 At the 11th hour of the 11th day of the 11th month, we will remember them. Lest we forget

12.01.2022 Have you had a chat with your family about organ and tissue donation? Donate life week started yesterday 26 July to 2nd August . #donatelife, #organs

11.01.2022 Happy Father’s Day to all the super hero’s out there ! Thanks for everything you do for all of us . #fathersday #pcd

10.01.2022 This little PCD champion Tyson is happy and proud to be able to have his mum share his story of PCD . We first meet Tyson at the age of 6 months . He has come along way and achieved many things with the support of his family . @candi_mc_ @bradcrome . Thanks to @thatslifeau for letting PCD Australia share this story so others can learn about this chronic illness . #pcd #champion #awareness #thatslifemagazine #tyson

09.01.2022 It’s Mint! The Royal Australian Mint have launched a new $1 coin - a donation dollar. The Australian Generosity Report reveals almost 3/5 Aussies would be likely to donate their coin if found in their change . Where do you stand ?... Donate today : www.pcdaustralia.org.au See more

08.01.2022 Another great fact about the PCD journey

07.01.2022 Great conversations with this group of Adult PCDer - great work guys and gals

07.01.2022 A big brother supporting his little brother with his therapies for PCD. Jack aged 5yrs and Will aged 2 years. #PCDWarrior #Brothers

07.01.2022 Well he did it - Graduated from Kindy 2020 - Congratulations Mason. PCD kids are born to tackle anything in life. From all of us at PCD Australia and your PCD family . Well done - enjoy your holidays before you start your next adventure. You are a star. ... #pcd #mason #success #kindy

06.01.2022 Who agrees? One of the three interrelated Pillars of the National Strategic Action Plan for Rare Diseases (the Action Plan) is Awareness and Education. Educatio...n about rare diseases needs to empower people living with a rare disease to become active participants in their rare disease journey. We understand that increased awareness and education at the individual and community level is vital. Click through to download a copy of the Action Plan to read more: https://bit.ly/rvaactionplan

05.01.2022 PCD Australia acknowledges all the traditional custodians of our great country. Always Was, Always Will Be.

04.01.2022 Hi Everyone, Please see the latest results (31 July) from the worldwide PCD survey in relation to Covid-19. If you would like to take part in the survey then we will post the link in the comments. It's a weekly survey to provide critical research information for the impact of Covid-19 on PCD. https://covid19pcd.ispm.ch/results/

04.01.2022 October PCD Awareness Month Fact #2 #cure #moveforacure #pcdaustraliaoctoberawareness #pcd #lungs #pcdaustralia

02.01.2022 Thanks @RunningOnAir for all the work you had put into the facts for us to share.