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For people with cystic fibrosis (CF), cross-infection can pose serious health risks when interacting in person.
People with CF grow bugs in their lungs which are usually harmless to people who don’t have the condition but can be easily transmitted from one person with CF to another and be very harmful.
This makes engaging with others with CF difficult. However, having a strong support system is an important aspect of overall well-being, especially for those managing a chronic illness like CF. The dangers of cross infection have resulted in the CF community never being allowed to just ‘catch up’.
Consumer Connect has been a passion project of Cystic Fibrosis Australia (CFA) and LJ Hooker, brought to life by emerging tech company Co-Star (formerly Padlokt). Our dreams are the same – to be able to connect people, break down barriers and ‘unlock the padlock’.
CFA hosts monthly catch-ups, usually around a topic that has been requested by a community member. CFA invites people to be on the panel including community members, medical professionals, government officials, and other experts in their field to join the discussion.
Every session is filmed live and is recorded and available to watch after.
Through Consumer Connect, we aim to ensure regular catch-ups are occurring on topics of interest to our community with the opportunity for people to engage as much or as little as they like.
Joining Consumer Connect is free and easy to do – all you need to do is create an account.
Date: 22nd June 2023
Time: 6.30pm – 7.30pm (AEDT)
Location: Online (free to attend)
To join the session: Follow this link and log in, or create an account
Rare Gene (nonsense) Mutations | Consumer Connect (padlokt.com)
Start submitting your questions today:
Register a question | Consumer Connect (padlokt.com)
Approximately 10% of people with cystic fibrosis have rare gene mutations. Within this 10%, there are further breakdowns as to how and why these particular mutations may or may not respond to the currently available CFTR modulators*. As an example, some people with cystic fibrosis may not produce any CFTR protein, meaning CFTR modulators will not work.
Research is being undertaken globally to see how these mutations may be corrected.
In support of raising awareness, Cystic Fibrosis Australia is delighted to welcome three researchers to our upcoming Consumer Connect session, who are currently investigating rare gene mutations within the field of cystic fibrosis – Prof Adam Jaffe, Dr. Shafagh Waters & Prof Peter Wark.
Cystic Fibrosis Australia CEO, Jo Armstrong, will host the session as the panel discuss what rare gene mutations are, how they differ from the ‘more common’ mutations, why these genes are difficult to treat and diagnose, and what the future holds.
With a panel filled with expertise, this is a great opportunity to submit any questions you have and find out more about Rare Gene Mutations.
*Cystic Fibrosis transmembrane conductance regulator (CFTR) modulators therapies are designed to correct the malfunctioning protein made by the CFTR gene
Past Sessions (to view all past sessions please log in to Consumer Connect)
- 22nd February 2023 – The importance of upper airways in Cystic Fibrosis
- 19th January 2023 – A deep dive into the Australian Cystic Fibrosis Data Registry
- 12th December 2022 – Physiotherapy in the changing CF landscape
- 24th November 2022 – Trikafta for 6 – 11 year olds – your questions answered
- 20 October 2022 – Humour & Health
- 9 September 2022 – Kyle Collis – Living life fearlessly
- 27 July 2022 – “Rory Morgan doesn’t live with CF – it lives with him”
- 31 March 2022 – It IS Time for Trikafta! And our next steps forward.
- 9 February 2022 – Trikafta
- 12 October 2021 – Jo Watson, Deputy Chair, PBAC
- 7 July 2021 – ‘CF & COVID-19’ – DÉJÀ VU
- 3 February 2021 – Organoid Research
- 15 December 2020 – Be The Best We Can Be
- 9 December 2020 – A Tremendous Trikafta Team
- 25 November 2020 – Time to advocate for Trikafta
- 9 November 2020 – Mycobacterium treatment and other emerging pathogens.
- 28 October 2020 – “COVID-19 and the CF Community
- 22 September 2020 – This Is Your Life, Mitch Messer
- 26 August 2020 – GI stands for two things – Gastrointestinal Medicine and Great Information
- 11 August 2020 – CF and the NDIS
- 9 June 2020 – COVID-19 Update … Vaccine Research and Clinical Response
- 20 May 2020 – Learning from Lockdown – Set Goals, Stay Motivated and Understand Your Behaviour
- 6 May 2020 – ‘There Is So Much To Know About COVID-19’
- 15 April 2020 – In A Crisis Ask An Expert
- 1 April 2020 – CF Health in COVID Lockdown – Mental, Physical and Dietary advice from CF Experts
- 24 March 2020 – An Evening With Experts