VIDEO CLIPS AND NEWS
RVA shares Video clips and News with You.
Photo Slideshow of RVA's Parliamentary Friends of Rare Diseases Event
Monday 24th November, 2014 - Parliament House, Canberra.
Please click here to view the photo slideshow.
Speaker: Elyshia Hickey
spoke on behalf of herself and her sister Emily Hickey, about their experience living with the rare disease Ehlers-Danlos
Click here to view.
Undiagnosed Children's Day - UK
SWAN-UK - Syndromes Without A Name
25th April, 2014
Undiagnosed Children's Day is based
around the the theme ‘#itsamystery’ to highlight the fact that many undiagnosed
children are medical mysteries, people around the country (UK) will be getting
together to fundraise or raise awareness in their local areas – some are
holding quizzes, some are dressing up as detectives or others are just having
good old fashioned bake sales.
out the video below where
children with undiagnosed genetic conditions tell Genetic Alliance UK's
Director, Alastair Kent, what they think Undiagnosed Children's Day should be
all about, and then share with all your friends so they can enjoy it too!
Facebook: SWANchildrenUK. Website: www.undiagnosed.org.uk. Twitter@SWAN-UK
For more information about SWAN Australia - click here. (www.swanaus.com.au)
RARE ORDEAL DRIVES DETERMINATION
Thursday 6th March / posted by Paul Van Lieshout Hunt
RTR 92.1FM (WA) - Radio Interview
Big diseases with bigger names are a concern to us all – but what happens when you have a condition and no one seems to be able to name it, let alone diagnose and help?
Susanna Wills-Johnson has experienced two different rare diseases – and is one of an estimated 1.5 million who lives with these conditions in Australia.
Kylie Sturgess spoke to her about what’s being done to promote a registry and develop a national framework – the National Rare Disease Plan – and how vital timely diagnosis, care and treatment is…
CLICK HERE to listen to the radio interview.
Kimberlee Francis shares the Personal Story of her daughter Kaitie
at Parliament House for Rare Voices Australia.
Click here to access the YouTube video of her speech.
Kimberlee (L) and Kaitie (R) Francis
The Francis Family
Natasha Griggs MP speaks on Rare Voices Australia
CLICK HERE to access the latest YouTube video.
Rare Disease Day - Official Video
CLICK Here to access the latest YouTube video.
A Message From Sean Hepburn Ferrer - 2014 Ambassador for Rare Disease Day
CLICK here to access the latest YouTube video.
MEDIA RELEASE ARTICLES for RARE DISEASE DAY 2014
Anger as Life Saving Drugs Stuck in Federal Bureaucratic Limbo - Sunday Herald, March 1, 2014
Rare Diseases find Common Ground (West Australian - Health & Medicine)
Waugh highlights rare disease plight.
Shining the light on rare diseases
Sunrise channel 7 - raising awareness for rare disease (Steve
Rare Disease Day was highlighted by The Wesley Hospital and Rare
Voices Australia to bring awareness to and improve care for people living
with a rare illness.
Fun run for International Rare Disease Day on the Cairns Esplanade
a chance for Angelman suffers to reach out.
Sunday Night on Channel 7 - Rare Disease Day program with Steve
Waugh. Yet to be aired - think it's tonight!
A Rare Night Out - ball to celebrate international rare disease
day (facebook page)
Blog by Carly Findlay - living with Lchthyosis.