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VIDEO CLIPS AND NEWS

RVA shares Video clips and News with You. 

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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 Syndrome.  

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.

Check 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)

 

 

 

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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.

 

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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

 

 

 

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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. 

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A Message From Sean Hepburn Ferrer - 2014 Ambassador for Rare Disease Day 

 

CLICK here to access the latest YouTube video. 

 

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MEDIA RELEASE ARTICLES for RARE DISEASE DAY 2014

 

http://www.heraldsun.com.au/news/victoria/anger-as-lifesaving-drugs-stuck-in-federal-bureaucratic-limbo/story-fni0fit3-1226842410049

Anger as Life Saving Drugs Stuck in Federal Bureaucratic Limbo - Sunday Herald, March 1, 2014 

 

http://health.thewest.com.au/news/1349/rare-diseases-find-common-ground

Rare Diseases find Common Ground (West Australian - Health & Medicine)

 

http://www.skynews.com.au/health/article.aspx?id=954140

Waugh highlights rare disease plight.

 

http://www.smh.com.au/national/health/shining-the-light-on-rare-diseases-20130223-2ey42.html

Shining the light on rare diseases

 

http://www.youtube.com/watch?v=gEc_quPvuBg

Sunrise channel 7 - raising awareness for rare disease (Steve Waugh)

 

http://www.couriermail.com.au/questnews/west/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/story-fni9r1r4-1226840822354

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.

 

http://www.cairnspost.com.au/lifestyle/fun-run-for-international-rare-disease-day-on-the-cairns-esplanade-a-chance-for-angelman-sufferers-to-reach-out/story-fnjpuwet-1226828981109

Fun run for International Rare Disease Day on the Cairns Esplanade a chance for Angelman suffers to reach out.

 

http://au.news.yahoo.com/sunday-night/features/article/-/16210223/rare-disease-day-info/

Sunday Night on Channel 7 - Rare Disease Day program with Steve Waugh. Yet to be aired - think it's tonight!

 

https://www.facebook.com/ararenightout

A Rare Night Out - ball to celebrate international rare disease day (facebook page)

 

http://carlyfindlay.blogspot.com.au/2014/02/rare-disease-day-2014-talking.html

Blog by Carly Findlay - living with Lchthyosis.