GUARD Rare Disease Day Events 2021
SWAN Australia – Rare Disease Day – Share your story
We want to learn about your SWAN child’s rare disease. If you are comfortable sharing your story, we would love to hear from you. We are offering our SWAN members two different time slots to share their story with others. The first at 3:00 PM AEST and the second at 8:30 PM AEST both on Rare Disease Day – 28 February. Please click on the link https://bit.ly/2LONx48 to register for the afternoon session and http://bit.ly/3daNbjG for the evening session. We look forward to chatting with you soon.
For more information about the sessions, please email events@swanaus.org.au or telephone 0404 280 441.
GaRDN Rare Disease Day Photography Competition
We want you to capture what it’s like to live with rare disease, whether it’s you, your children or your family. Show us the beauty, show us some inspiration, share your struggles, anything goes.
Winners will be announced on Rare Disease Day, on Sunday 28 February 2021.
For further details and to submit your entry go to https://gardn.org.au/photo-competition/
GaRDN Rare Disease Day Kids Art Competition
We’d love to see your kids best self portrait!
We will be asking all participating kids to ‘be creative, be smart, be bold, be unique, be fun, and most
of all, be YOU!’
Winning designs will receive their artwork printed on a special tote bag or tea towel and these will be then sold around Australia for our national fundraising event!
All entries will be printed together and sold as a special Many, Strong, Proud Rare Disease Day bag or tea towel.
For further details or to enter please go to https://gardn.org.au/art-competition/
Bridges Night Ride – Perth
This year, honorary life member of GaRDN, Andrew Bannister along with his cycling group will be doing the Bridges Night Ride. Andrew has nominated GaRDN as the charity who will benefit from the ride, with part of the registration fees being donated to allow GaRDN to keep all of their much needed services going.
GSNV – Rare Disease Day 2021
The GSNV event will be held virtually on Friday Feb 26th from 9:30am – 1:30 pm
This year the GSNV presents a series of conversations lead by our CEO Monica Ferrie and focuses on strengthening the capacity of the genetic, undiagnosed and rare disease communities (GUARD) to establish their ‘team’ for support, advocacy and awareness.
Join us as our conversation extends to share the knowledge and experience of Sean Murray, CEO and founder of Mito Foundation. Along with Megan Donnell, CEO of The Childhood Dementia Initaitive, our key note speakers share motivation to drive impact in the mito community.
The GSNV is charged with building and supporting a string sector and support network fro all people living with rare undiagnosed and genetic conditions and all those who support them.
Join us for this important event as we discuss how we are building our team to support you to build yours
Register at https://www.eventbrite.com.au/e/137368728565
or our facebook page https://www.facebook.com/Genetic.Support/