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Press Release on 4th Pompe Day

Patient families to raise fund research to save their children. 4th Pompe Awareness day Parent groups raise funds for gene therapy research No Govt support for rare disease patients Pompe, a rare disease, hopes to be heard New Beginning: For the first time in India, rare disease patient families are leading the way for funding […]

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BioMarin provided the IPA on their clinical trial investigating the safety and efficacy of BMN 701

As you will read below, the trial will consist of three dosing groups: 5, 10 and 20 mg/kg.  The 5 and 10 mg/kg groups have been fully enrolled, and the 20 mg/kg group is currently enrolling. For more information about the BioMarin trials please contact Sean McCarthy of BioMarin at smccarthy@bmrn.com The IPA is also […]

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Patient Advocacy Meetings in Hongkong

Patient Advocacy Meetings in Hongkong

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Pompe Patient advocacy efforts in Kerala

Pompe Patient advocacy efforts in Kerala

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ICMR reply on support for LSD support

ICMR reply on support for LSD support

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Millions of children in India suffer from rare diseases – Report

Millions of children in India suffer from rare diseases - Report

According to Dr I.C. Verma, chairman, department of genetic medicine, Sir Ganga Ram Hospital, about 35 million people suffer from rare diseases in India. The absence of any formal data collection on such diseases, however, makes it difficult to reach a definitive conclusion about the situation. The lack of an existent system to tackle these […]

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