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  • Education Archives - Canadian Association of Pompe
    An eLearning module to learn about Pompe Disease by going through the journey of Sam recently diagnosed with Pompe Disease Recent Posts Inequities Between Provinces in Treating Rare Diseases Rare Disease Strategy Urgently Needed to Help 3 Million Canadians BioMarin Announces Interim Analysis of INSPIRE Clinical Trial in Pompe Disease at 34th Annual J P Morgan Annual Healthcare Conference Sanofi Genzyme Announces Recipients of Patient Advocacy Leadership PAL Awards Amicus

    Original URL path: http://www.pompecanada.com/blog/category/education/ (2016-02-13)
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  • Events Archives - Canadian Association of Pompe
    Day coordinated by EURORDIS On and around this day hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness raising activities around the slogan Join Together for Better Care International Pompe Day 2014 by CAP Feb 6 2014 Events The IPA is excited to announce that the international Pompe community has chosen April 15 2014 as the first annual International Pompe Day Story Telling For Health A Workshop for the Rare Disease Community by CAP Aug 28 2013 Events Hosted by the National Gaucher Foundation of Canada facilitated by Emma Rooney developer of www mynormal ca You ll leave this workshop with practical ideas and next steps for how to get started on your own story project 2013 CAP Meeting Save the Date by CAP Mar 27 2013 Events The 2013 Canadian Association of Pompe National Meeting will be held in Toronto June 8 9 Flashmob Rare Disease Day Amsterdam by CAP May 30 2011 Events The Dutch Rare Disease Day was celebrated in Amsterdam A big surprise was planned for all participants The Dutch Genzyme team in close collaboration with the organizing committee had organized an unannounced spectacular end to the meeting Recent Posts

    Original URL path: http://www.pompecanada.com/blog/category/events/ (2016-02-13)
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  • Interviews Archives - Canadian Association of Pompe
    Interview with Dr Priya Kishnani by CAP Feb 23 2011 Interviews This interview was in Women in Duke Medicine Dec 29 2010 Dr Kishnani speaks about her family s background particularly her mother s background as a physician in India coming to the United States medical genetics Duke s strength in medical genetics Recent Posts Inequities Between Provinces in Treating Rare Diseases Rare Disease Strategy Urgently Needed to Help 3

    Original URL path: http://www.pompecanada.com/blog/category/interviews/ (2016-02-13)
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  • Living with Pompe Archives - Canadian Association of Pompe
    life I believe that this has helped shape me as a better person I d like to share these lessons and insights with you S O S Help Make a Difference in Ian s Life by CAP Nov 12 2007 Living with Pompe Recent Posts Inequities Between Provinces in Treating Rare Diseases Rare Disease Strategy Urgently Needed to Help 3 Million Canadians BioMarin Announces Interim Analysis of INSPIRE Clinical Trial

    Original URL path: http://www.pompecanada.com/blog/category/living-with-pompe/ (2016-02-13)
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  • Research & Studies Archives - Canadian Association of Pompe
    s still very early in the development process and there are many unknowns the hope is that through this more efficient uptake into the muscle cell neoGAA might improve on the effectiveness of the existing therapy First experience with enzyme replacement therapy during pregnancy and lactation in Pompe disease by CAP Apr 1 2013 Research Studies An article published on PubMed gov Dec 2011 describes a 40 year old woman

    Original URL path: http://www.pompecanada.com/blog/category/research-studies/ (2016-02-13)
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  • advocacy Archives - Canadian Association of Pompe
    SAN FRANCISCO CA February 26 2015 Audentes Therapeutics Inc a biotechnology company committed to the development and commercialization of gene therapy products for patients with serious rare diseases today announced its support for Rare Disease Day to be held on February 28th 2015 The theme of this year s Rare Disease Day is Living with a Rare Disease In honor of the day Audentes is pleased to announce the launch of a website Genzyme Recognizes International Rare Disease Day with Global Awareness Programs and Launch of Fourth Annual Patient Advocacy Leadership PAL Awards by CAP Feb 28 2014 Press Releases CAMBRIDGE Mass BUSINESS WIRE Genzyme a Sanofi company EURONEXT SAN and NYSE SNY today announced its support of International Rare Disease Day with a series of initiatives meant to call attention to rare diseases as an important public health issue and to improve rare disease education research and treatment Genzyme Recognizes International Rare Disease Day with Second Annual Patient Advocacy Grant Program by CAP Feb 28 2012 Press Releases CAMBRIDGE Mass BUSINESS WIRE Genzyme a Sanofi company EURONEXT SAN and NYSE SNY today announced its support of International Rare Disease Day with a series of events to celebrate and recognize the global rare disease community Genzyme Recognizes International Rare Disease Day by Launching New Patient Advocacy Grant Program by CAP Feb 28 2011 Press Releases Genzyme Corporation NASDAQ GENZ today recognized International Rare Disease Day with the launch of a new program the Genzyme Patient Advocacy Leadership Awards PAL Awards MP Dr Kirsty Duncan s letter to the Speaker of the House of Commons on February 28 Rare Disease Day by CAP Feb 28 2011 News Mr Speaker some 2 7 million Canadians are affected by 1 in 6 000 rare disorders such as cystic fibrosis sickle cell disease and

    Original URL path: http://www.pompecanada.com/blog/tags/advocacy/ (2016-02-13)
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  • awards Archives - Canadian Association of Pompe
    Directrice des services Division du Québec This is a very special award please read the letter below Genzyme Recognizes International Rare Disease Day by Launching New Patient Advocacy Grant Program by CAP Feb 28 2011 Press Releases Genzyme Corporation NASDAQ GENZ today recognized International Rare Disease Day with the launch of a new program the Genzyme Patient Advocacy Leadership Awards PAL Awards Recent Posts Inequities Between Provinces in Treating Rare

    Original URL path: http://www.pompecanada.com/blog/tags/awards/ (2016-02-13)
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  • Awareness Archives - Canadian Association of Pompe
    Global Education and Fund Raising Events Announces Founding Partnership of Give RARE by CAP Feb 27 2015 Press Releases Genzyme a Sanofi company announced today that in support of International Rare Disease Day the company is hosting several events internationally to help raise awareness of rare diseases as a critical global health issue requiring ongoing research education and new treatments Genzyme also announced that it is a founding partner of Give RARE a rare diseases global giving day Rare Diseases As Featured in National Post by CAP Oct 30 2013 News A special insert to the October 19 2013 National Post that brings focus to the topic of rare disease in Canada how it affects so many of us and what changes are forthcoming Flashmob Rare Disease Day Amsterdam by CAP May 30 2011 Events The Dutch Rare Disease Day was celebrated in Amsterdam A big surprise was planned for all participants The Dutch Genzyme team in close collaboration with the organizing committee had organized an unannounced spectacular end to the meeting New Jersey Declares Feb 28 to be Pompe Disease Awareness Day by CAP Mar 11 2011 Awareness New Jersey has designated Feb 28 to be Pompe Disease Awareness Day to increase public awareness of Pompe Disease N B woman with rare disease finds hope in Hollywood by CAP Mar 16 2010 Awareness A New Brunswick woman with a rare genetic disease hopes the release of a new Harrison Ford movie on Friday will help draw attention to her plight Victims of rare condition hope movie sheds light on plight by CAP Jan 24 2010 News Extraordinary Measures details father s work to develop drug to fight Pompe disease Canadians living with a rare genetic disease are counting on a new Hollywood film opening today to draw attention to

    Original URL path: http://www.pompecanada.com/blog/tags/awareness/ (2016-02-13)
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