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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)
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  • Donate - Canadian Association of Pompe
    accept donations Please contact us to discuss ways to help 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

    Original URL path: http://www.pompecanada.com/donate/ (2016-02-13)
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  • Contact - Canadian Association of Pompe
    o p c n d o Name Email Address Message Message 8 9 Submit 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

    Original URL path: http://www.pompecanada.com/contact/ (2016-02-13)
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  • About Us - Canadian Association of Pompe
    just in 2014 that the New Brunswick Drugs for Rare Diseases Plan was passed This was a huge milestone for many people especially those families directly affected Brad Crittenden President It s been my pleasure to serve as CAP s president since 2012 I was diagnosed with Pompe disease about nine years ago so I know very well what some of the challenges are that we all live with every day It s not all bad though I ve met some wonderful people that I never would have met otherwise We ve seen some significant changes the past few years It isn t good to see more patients diagnosed but it s good to see them diagnosed with a disease that we know they had anyway Now they can connect with other patients families As we do our best to raise awareness patients will be diagnosed sooner CAP has always been a supportive group of families and advocates but since becoming a non profit society we can expand on what we re able to do There s so much research being done on treatments for rare diseases including Pompe disease This is one of very few disorders where a treatment

    Original URL path: http://www.pompecanada.com/about-us/ (2016-02-13)
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  • Personal Stories - Canadian Association of Pompe
    in the menu to the right Get to know them Personal Stories Annette s Story Lorena s Story Noah s Story Trevor s Story 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

    Original URL path: http://www.pompecanada.com/personal-stories/ (2016-02-13)
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  • Newsletter - Canadian Association of Pompe
    News Feb 2014 Edition CAP News Dec 2013 Edition CAP News May 2013 Edition Subscribe to our newsletter First Name Last Name Email Address Subscribe 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

    Original URL path: http://www.pompecanada.com/newsletter/ (2016-02-13)
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  • About Pompe Disease - Canadian Association of Pompe
    the Dutch pathologist J C Pompe The build up of glycogen causes progressive muscle weakness myopathy throughout the body and affects various body tissues particularly in the heart skeletal muscles liver and nervous system See Wikipedia for classification signs symptoms diagnosis cause treatment prognosis epidemiology and history Great sources of information about Pompe disease Acid Maltase Deficiency Association International Pompe Association New Zealand Pompe Network Pompe Registry Pompe com operated

    Original URL path: http://www.pompecanada.com/about-pompe-disease/ (2016-02-13)
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  • Blog - Canadian Association of Pompe
    inherited disorders that can cause progressive and debilitating health problems read more Amicus Therapeutics Commences Phase 1 2 Study of Novel ERT for Treatment of Pompe Disease by CAP Dec 22 2015 Press Releases Amicus Therapeutics Nasdaq FOLD a biopharmaceutical company at the forefront of rare and orphan diseases today announced that its investigational new drug IND application submitted to U S Food and Drug Administration FDA is now effective which allows Amicus to begin site initiation and enrollment of a Phase 1 2 study of ATB200 in patients with Pompe disease read more Ten Years of Newborn Screening for Pompe Disease by CAP Nov 20 2015 News November 18 2005 was a special day It was the day that the first patient identified with Pompe disease by newborn screening NBS was born in Taiwan She was fortunate that she was born in a hospital where the pilot program started only eighteen days before she was born and that she was born after many people worked tirelessly to develop a diagnostic method suitable for NBS read more Rare Disease Group Urges Ontario to Include Devastating Neuromuscular Condition in Newborn Screening Program by CAP 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 read more The Kaitlyn Hatchard Award for Team Spirit by CAP Jul 6 2015 CAP News We were very honoured to accept the Kaitlyn Hatchard Award for Team Spirit for the

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