Video
Bc.
November 12,2007
Watch the video and lend your support to Ian and those suffering from Pompe disease so that they can get access to potentially life saving treatment.
Show your support by visiting www.pompecanada.com or joining the facebook group "Canadian Association of pompe".(less)
Added: November 12 ,2007
Catergory : Nonprofits 2 Activism
Tags: S.O.S Pompe Ian Hamilton MacPherson rare disease help health orphan The Police Canada drug URL Embed
Http://www.youtube.com/user/emagine1980
S.O.S
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Listen to the radio interview Ian Macpherson did with his local radio station
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Listen to the radio interview Trevor & Linda Pare did with CHQR 770 am (The Wold Tonight) radio station
Note: but you can’t fast forward. You have to listen to the news, etc. until they come on.
We were able to hear the 10-15 minute interview Linda did last night on the radio (The World Tonight).
There were also about 30 minutes of follow-up calls where the host chatted with listeners and got their opinions on Linda and Trevor’s story.
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Listen to the radio interveiw Trevor & Linda Pare did with CBC Erin Collins
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Watch this video clip from Edmonton Global TV, Febuary 29 Rare Disorder Day with Su-Lin Goh reporting
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Government Resouces
Articles
Information on management
of Pompe disease
Family Stories
Medical contacts
Francphone contact
Personal contacts
Links
Video
Other names for Pompe
What is happening?
About Pompe
Home
Trevor meets Premier Ed Stelmach
Edmonton Proclames Febuary, 29,
2008 Rare Disease Day
Frequently ask Questions
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Watch this video clip from Red Deer CHCA News April 17 2008 with Mike Dennis
Look for Trevor Update
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Watch
A good reason for New born sreening
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Listen to the radio interveiw with Guy Ashford-Smith on CBC radio April 19 /2008 The house
MP Don Bell tells Kathleen about the inspiration behind his Private Member's Bill on "orphan drugs"; "24:08"
Guy AShford -Smith "31:10"
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Listen to radio interview with Monty Keast on CBC radio
Tue 13 May 2008 14:34:06 -0400
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LINDA PARE HAS BEEN WAITING ANXIOUSLY FOR THE PROVINCIAL GOVERNMENT TO APPROVE FUNDING FOR A DRUG TO TREAT HER SONS RARE DISEASE. WITHOUT IT, THE YOUNG TEEN WOULD CERTAINLY DIE. ALBERTA HEALTH MINISTER RON LIEPERT CALLED SUNDAY TO GIVE MOM THE GOOD NEWS. CHCA'S TANARA MCLEAN WAS WITH THE PARE'S TODAY. CHCA NEWS May12 2008
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