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  • CAP on Orphanet - Canadian Association of Pompe
    team National teams are responsible for the collection of information on expert centres medical laboratories ongoing research and patient organisations in their country All Orphanet teams work according to the Orphanet Standard Operating Procedures The French coordinating team is responsible for the infrastructure of Orphanet management tools quality control rare disease inventory classifications and production of the encyclopaedia Orphanet is governed by various committees which independently supervise the project in order to ensure its coherence evolution and viability www orpha net For more information about Orphanet click here Tagged Orphanet Share this Facebook Twitter Google LinkedIn Related Submit a Comment Cancel reply Your email address will not be published Required fields are marked Comment Name Email Website Recent Posts Inequities Between Provinces in Treating Rare Diseases Rare Disease Strategy Urgently Needed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 Therapeutics Commences Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease Categories Awareness CAP News Education Events Interviews Living with Pompe News Press Releases Research Studies Tags advocacy awards Awareness

    Original URL path: http://www.pompecanada.com/blog/cap-news/cap-on-orphanet/ (2016-02-13)
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  • Rare Disease Day 2013 from CAP - Canadian Association of Pompe
    Toronto Genzyme again recognizes International Rare Disease Day with Global Awareness Programs and launch of their Third Annual Patient Advocacy Leadership PAL Awards Check out the links below and join the conversation Rare Disease Day on Facebook Rare Disease Day on Twitter Rare Disease Day on YouTube I would like to take this opportunity to thank CORD for their tireless work in what has ultimately brought the announcement late in 2012 of the Canadian Government Orphan Drug Framework It s a step along the path but there are still people in Canada that don t have access to the same healthcare that others do This must be fixed Brad Crittenden President Canadian Association of Pompe Tagged Rare Disease Day Share this Facebook Twitter Google LinkedIn Related Submit a Comment Cancel reply Your email address will not be published Required fields are marked Comment Name Email Website 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 Therapeutics Commences Phase 1

    Original URL path: http://www.pompecanada.com/blog/cap-news/rare-disease-day-2013-from-cap/ (2016-02-13)
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  • Canadian Association of Pompe - rare disease patient advocacy
    Awards Amicus Therapeutics Commences Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease News CAP nominates Pompe disease for newborn screening News Ten Years of Newborn Screening for Pompe Disease in Taiwan What is Pompe disease Pompe disease is one of about 50 Lysosomal Storage Disorders Pompe patients are deficient in the critical enzyme acid alpha glucosidase More About CAP The Canadian Association of Pompe was established to help persons in Canada and elsewhere become familiar with Pompe disease and to support persons with Pompe disease More Connections Ways to connect with other patients families and social media opportunities to stay informed More New Patients and Families Welcome to the wonderful world of rare disease It s a much different world than it was a few years ago There s so much information out there and there are places to turn for support and friendship With social media especially Facebook and Twitter there are answers There are patient advocacy groups all over the world of which CAP is one of them Subscribe to our newsletter First Name Last Name Email Address Subscribe New Brunswick 2014 Out of a stormy cloud comes a whole bunch o crazy people

    Original URL path: http://www.pompecanada.com/ (2016-02-13)
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  • Canadian Association of Pompe - rare disease patient advocacy
    Amicus Therapeutics Commences Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease News CAP nominates Pompe disease for newborn screening News Ten Years of Newborn Screening for Pompe Disease in Taiwan What is Pompe disease Pompe disease is one of about 50 Lysosomal Storage Disorders Pompe patients are deficient in the critical enzyme acid alpha glucosidase More About CAP The Canadian Association of Pompe was established to help persons in Canada and elsewhere become familiar with Pompe disease and to support persons with Pompe disease More Connections Ways to connect with other patients families and social media opportunities to stay informed More New Patients and Families Welcome to the wonderful world of rare disease It s a much different world than it was a few years ago There s so much information out there and there are places to turn for support and friendship With social media especially Facebook and Twitter there are answers There are patient advocacy groups all over the world of which CAP is one of them Subscribe to our newsletter First Name Last Name Email Address Subscribe New Brunswick 2014 Out of a stormy cloud comes a whole bunch o crazy people waving

    Original URL path: http://www.pompecanada.com/ (2016-02-13)
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  • Canadian Association of Pompe - rare disease patient advocacy
    Therapeutics Commences Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease News CAP nominates Pompe disease for newborn screening News Ten Years of Newborn Screening for Pompe Disease in Taiwan What is Pompe disease Pompe disease is one of about 50 Lysosomal Storage Disorders Pompe patients are deficient in the critical enzyme acid alpha glucosidase More About CAP The Canadian Association of Pompe was established to help persons in Canada and elsewhere become familiar with Pompe disease and to support persons with Pompe disease More Connections Ways to connect with other patients families and social media opportunities to stay informed More New Patients and Families Welcome to the wonderful world of rare disease It s a much different world than it was a few years ago There s so much information out there and there are places to turn for support and friendship With social media especially Facebook and Twitter there are answers There are patient advocacy groups all over the world of which CAP is one of them Subscribe to our newsletter First Name Last Name Email Address Subscribe New Brunswick 2014 Out of a stormy cloud comes a whole bunch o crazy people waving their

    Original URL path: http://www.pompecanada.com/ (2016-02-13)
    Open archived version from archive

  • Canadian Association of Pompe - rare disease patient advocacy
    Amicus Therapeutics Commences Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease News CAP nominates Pompe disease for newborn screening News Ten Years of Newborn Screening for Pompe Disease in Taiwan What is Pompe disease Pompe disease is one of about 50 Lysosomal Storage Disorders Pompe patients are deficient in the critical enzyme acid alpha glucosidase More About CAP The Canadian Association of Pompe was established to help persons in Canada and elsewhere become familiar with Pompe disease and to support persons with Pompe disease More Connections Ways to connect with other patients families and social media opportunities to stay informed More New Patients and Families Welcome to the wonderful world of rare disease It s a much different world than it was a few years ago There s so much information out there and there are places to turn for support and friendship With social media especially Facebook and Twitter there are answers There are patient advocacy groups all over the world of which CAP is one of them Subscribe to our newsletter First Name Last Name Email Address Subscribe New Brunswick 2014 Out of a stormy cloud comes a whole bunch o crazy people waving

    Original URL path: http://www.pompecanada.com/ (2016-02-13)
    Open archived version from archive

  • Canadian Association of Pompe - rare disease patient advocacy
    Commences Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease News CAP nominates Pompe disease for newborn screening News Ten Years of Newborn Screening for Pompe Disease in Taiwan What is Pompe disease Pompe disease is one of about 50 Lysosomal Storage Disorders Pompe patients are deficient in the critical enzyme acid alpha glucosidase More About CAP The Canadian Association of Pompe was established to help persons in Canada and elsewhere become familiar with Pompe disease and to support persons with Pompe disease More Connections Ways to connect with other patients families and social media opportunities to stay informed More New Patients and Families Welcome to the wonderful world of rare disease It s a much different world than it was a few years ago There s so much information out there and there are places to turn for support and friendship With social media especially Facebook and Twitter there are answers There are patient advocacy groups all over the world of which CAP is one of them Subscribe to our newsletter First Name Last Name Email Address Subscribe New Brunswick 2014 Out of a stormy cloud comes a whole bunch o crazy people waving their hands

    Original URL path: http://www.pompecanada.com/ (2016-02-13)
    Open archived version from archive

  • Canadian Association of Pompe - rare disease patient advocacy
    Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease News CAP nominates Pompe disease for newborn screening News Ten Years of Newborn Screening for Pompe Disease in Taiwan What is Pompe disease Pompe disease is one of about 50 Lysosomal Storage Disorders Pompe patients are deficient in the critical enzyme acid alpha glucosidase More About CAP The Canadian Association of Pompe was established to help persons in Canada and elsewhere become familiar with Pompe disease and to support persons with Pompe disease More Connections Ways to connect with other patients families and social media opportunities to stay informed More New Patients and Families Welcome to the wonderful world of rare disease It s a much different world than it was a few years ago There s so much information out there and there are places to turn for support and friendship With social media especially Facebook and Twitter there are answers There are patient advocacy groups all over the world of which CAP is one of them Subscribe to our newsletter First Name Last Name Email Address Subscribe New Brunswick 2014 Out of a stormy cloud comes a whole bunch o crazy people waving their hands at

    Original URL path: http://www.pompecanada.com/ (2016-02-13)
    Open archived version from archive



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