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IPA Statement on Biomarin

IPA Statement on Biomarin

 

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Why People With Rare Diseases Are Writing to PM Modi

Why People With Rare Diseases Are Writing to PM Modi

He will turn two this October, but unlike other children his age Baby Haadi cannot sit up, make noises or eat. The little boy’s growth is severely delayed as he suffers from Maple Syrup Urine Disease (MSUD) – a genetic disorder which affects one in 1,85,000 newborns in the world. Because of his condition Baby […]

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May 2016 Update from IPA

May 2016 Update from IPA

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CME programme: Pompe Disease -10 years of definitive therapy

Date: 11th June 2016 Venue: Seminar Hall, Indira Gandhi Institute of Child Health, Bangalore. 9-9.30am Registration and Coffee 9.30-9.45 Lamp lighting and introductory remarks Dr Asha Benkappa, Director, IGICH 10-10.30am Overview of Pompe disease: presentation, diagnosis, inheritance pattern and prenatal diagnosis Dr Sanjeeva G Asst Prof. and Fellowship in Paed Genetics, IGICH 10.30-11am Pulmonary issues and management Dr Samatha […]

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Sanofi Genzyme Presents Results from Phase 1/2 Study of Investigational Second-Generation Therapy for Pompe Disease

Sanofi Genzyme has a long history of investing in research and development to further the understanding of Pompe disease and advance treatment options. Click here to read more.

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Pompe – A Rare Disease And A Fathers Fight For His Daughter

Pompe – A Rare Disease And A Fathers Fight For His Daughter

Pompe is a rare genetic disorder characterized by the deficiency of lysosomal enzyme alpha-glucosidase. This enzyme plays an important role in breaking down the complex carbohydrate glycogen and convert it into the simple sugar glucose. The birth of a child is one of the most precious moment in any parent’s life. So was it for […]

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Amicus Therapeutics Commences Phase 1/2 Study of Novel ERT for Treatment of Pompe Disease

CRANBURY, N.J., Dec. 22, 2015 (GLOBE NEWSWIRE) — 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 […]

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Exercise and Pompe Disease

Exercise and Pompe Disease

New research recently published online in the Orphanet Journal of Rare Diseases suggests that regular exercise routine can help patients with Pompe disease who are also taking enzyme replacement therapy(ERT).1 Pompe disease is a rare, oft-fatal form of muscular dystrophy.2 The inherited lysosomal storage disorder, estimated to occur in roughly 1 out of every 40,000 […]

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Treat rare disease patients for free

Treat rare disease patients for free

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Pompe Day: Raising Hopes Through Fund Raising for Research and Gene Therapy

Pompe Day: Raising Hopes Through Fund Raising for Research and Gene Therapy

India’s first National Pompe Day was marked on 1 June 2012. This day was started in 2011 by the president of the LSDSS (Lysosomal Storage Disorder Support Society) and founder of Pompe Foundation India, Prasanna Shirol in order to raise public awareness and garner support towards this rare disease. Prasanna is the father of Nidhi […]

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