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World Birth defect Day Awareness campaign

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Its Now Or Never Make Your Opinion Heard

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Policy on rare disease treatment discriminates against APL patients: Plea in HC

The Delhi High Court on Monday sought the Centre and AAP government’s stand on two girls’ pleas claiming that the National Policy for Treatment of Rare Diseases discriminates against patients above the poverty line (APL). Justice...

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PIL in SC over committee formation for rare diseases’ treatment

New Delhi [India]: A Public Interest Litigation (PIL) has been filed in the Supreme Court against the Centre and state governments for “failing to constitute a state-level technical-cum-administrative committee, and to identify designated hospitals for treatment of people...

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Gaucher Disease Awareness Day commemorated in Bangalore

27thSeptember 2018, Bangalore: In the run up to International Gaucher Dayto be commemorated on 1st October, the Centre for Human Genetics (CHG)together with Organization for Rare Diseases India (ORDI), organised...

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Telangana sits on rare disease record

Telangana state has not even given data on the incidence of these diseases to the Centre. Hyderabad: Despite the sanction of a corpus of Rs 100 crore for the treatment of...

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Policy on rare disease treatment discriminates against APL patients: Plea in HC

The Delhi High Court on Monday sought the Centre and AAP government’s stand on two girls’ pleas claiming that the National Policy for Treatment of Rare Diseases discriminates against patients above the poverty line (APL). Justice...

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Treatment With A New Drug Strengthens The Muscles Of Patients With Pompe Disease

Pompe disease is a rare and potentially fatal metabolic myopathy (prevalence 1 in 20,000). In Pompe disease, the deficiency of lysosomal acid α-glucosidase (GAA) leads to accumulation of lysosomal glycogen...

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Rare Pediatric Disease Designation Granted to Stargardt Disease Treatment, LBS-008

  Rare Pediatric Disease Designation Granted to Stargardt Disease Treatment, LBS-008  The US Food and Drug Administration (FDA) has granted a rare pediatric disease designation to Lin BioScience’s LBS-008 for...

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Rare vascular disease cured by delicate surgery

Doctors found out that hypertension was not the only affliction that was troubling Suresh. They found that when they checked the blood pressure on the right hand it was normal,...

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