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  • CAP Archives - Canadian Association of Pompe
    of rare diseases out there Collectively we re not so rare after all 2014 CAP Meeting Save the Date update by CAP Feb 19 2014 Events We re very excited to announce that the 2014 meeting of the Canadian Association of Pompe will be held in Fredericton New Brunswick June 20 23 2013 CAP Meeting Save the Date by CAP Mar 27 2013 Events The 2013 Canadian Association of Pompe

    Original URL path: http://www.pompecanada.com/blog/tags/cap/ (2016-02-13)
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  • chaperone Archives - Canadian Association of Pompe
    2013 GLOBE NEWSWIRE Amicus Therapeutics Nasdaq FOLD today announced positive results from clinical and preclinical studies of the pharmacological chaperone AT2220 duvoglustat HCl in combination with ERT for Pompe disease at the Lysosomal Disease Network WORLD Symposium Amicus Therapeutics Announces Positive Preliminary Results From Ongoing Phase 2 Chaperone Enzyme Replacement Therapy ERT Co Administration Study for Pompe Disease by CAP Jun 26 2012 Press Releases CRANBURY N J June 26 2012 GLOBE NEWSWIRE Amicus Therapeutics Nasdaq FOLD today announced positive preliminary results from an ongoing Phase 2 open label drug drug interaction study Study 010 to evaluate the safety and pharmacokinetic PK effects of the pharmacological chaperone AT2220 duvoglustat HCl co administered with enzyme replacement therapy ERT for Pompe disease Amicus Therapeutics Awarded Grant From Muscular Dystrophy Association for Pompe Disease Program by CAP Feb 7 2012 Press Releases CRANBURY N J Feb 7 2012 GLOBE NEWSWIRE Amicus Therapeutics Nasdaq FOLD a biopharmaceutical company at the forefront of therapies for rare and orphan diseases today announced the receipt of a two year 186 000 grant from the Muscular Dystrophy Association MDA Amicus Therapeutics Announces FDA Agreement to Commence Phase 2 Study of AT2220 Co administered with Enzyme Replacement Therapy for

    Original URL path: http://www.pompecanada.com/blog/tags/chaperone/ (2016-02-13)
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  • CORD Archives - Canadian Association of Pompe
    on behalf of the 2 8 million Canadians with rare disorders welcomes Health Minister Aglukkaq s announcement of the first ever Canadian framework to increase access to new treatments and information and the launch of Orphanet Canada 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

    Original URL path: http://www.pompecanada.com/blog/tags/cord/ (2016-02-13)
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  • eLearning 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/tags/elearning/ (2016-02-13)
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  • Emma Rooney Archives - Canadian Association of Pompe
    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 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

    Original URL path: http://www.pompecanada.com/blog/tags/emma-rooney/ (2016-02-13)
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  • ERT Archives - Canadian Association of Pompe
    Sep 11 2015 Press Releases TORONTO Sept 11 2015 The Canadian Association of Pompe CAP today submitted a nomination for Pompe disease to be considered for addition in Ontario s newborn screening panel In recognition of Newborn Screening Awareness Month CAP urges Newborn Screening Ontario to expand its program to include this rare neuromuscular condition Without early diagnosis and treatment infants with this rare genetic illness are not likely to survive past the age of one New Brunswick Announces Plan to Treat Patients by CAP Jul 28 2014 Press Releases The provincial government has established the New Brunswick Drugs for Rare Diseases Plan which will provide assistance to those with certain rare diseases who face high drug costs New Brunswick will partner with Ontario to deliver the plan using its Drugs for Rare Diseases Framework The framework was established to assess drugs using the best available evidence and recommend drugs for funding based on clinical criteria Update from Genzyme on neoGAA Pompe clinical development program 11th February 2014 by CAP Mar 3 2014 Research Studies Genzyme is in the early stages of investigating a next generation enzyme replacement therapy neoGAA for Pompe disease It differs from the original ERT whereby carbohydrates are bonded onto the enzyme during the complex manufacturing process of neoGAA These carbohydrates are thought to help the enzyme enter the muscles more efficiently Though it 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 with Pompe

    Original URL path: http://www.pompecanada.com/blog/tags/ert/ (2016-02-13)
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  • Extraordinary Measures Archives - Canadian Association of Pompe
    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 their debilitating and often deadly condition Extraordinary Movie sheds light on treatment of rare disease by CAP Jan 22 2010 News Ian MacPherson was not expected to make it past his third decade But now he is 29 and dreams of a future where every Canadian with Pompe disease has access to the treatment he or she needs Pompe is a rare and often fatal genetic disease caused by an enzyme More than a movie by CAP Jan 22 2010 Awareness A new Harrison Ford movie hits close to home for an Alberta teen Extraordinary Measures now in theatres tells the true story of a father s quest to find a researcher who could develop a treatment for Pompe disease a rare neuromuscular genetic condition afflicting Recent Posts Inequities Between Provinces in Treating Rare Diseases Rare Disease Strategy Urgently Needed to Help 3 Million Canadians BioMarin Announces

    Original URL path: http://www.pompecanada.com/blog/tags/extraordinary-measures/ (2016-02-13)
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  • Fabry Archives - Canadian Association of Pompe
    24 2013 Researchers in Calgary have launched the first gene therapy clinical trial in the world for Fabry disease that could ultimately lead to a permanent cure 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

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