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National Crowdfunding Portal For Rare Diseases Fails To Meet Expectations Of Patients And Caregivers

Aimed at raising money for treatment of rare diseases that need expensive and life-long treatment and affect a small percentage of the population     News:- 1)Platform launched on August...

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Three Children With Gaucher’s Disease Set To Receive Treatment From Next Week

Parents hope government will step in to ensure continuous supply of medicines Next week, three children with Gaucher’s disease will get some relief as the Health Department will supply them...

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Rare Disease Patients Deprived Of Central Funds, Karnataka Govt Aid To Go Dry Soon

The IGICH will face a serious difficulty from August 2021, the High Court observed on June 18 this year.   BENGALURU: In an ongoing case in the Karnataka High Court...

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Three kids get life-saving Rs 16-crore injections for free at Bengaluru hospital

BENGALURU: Three girls suffering from the rare disease, Spinal Muscular Atrophy, were administered the expensive gene therapy, Zolgensma, for free at Bangalore Baptist Hospital on Thursday. Each vial of the one-time...

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Cystic Fibrosis Day

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International Pompe Day

With NO support from the government, a faulty gene puts families with #Rarediseases in India, in a never-ending odyssey! Meet the Pompe Warriors, 2 Different Lives, and their unique stories....

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On International Pompe Day, Pompe Foundation presents a captivating session on ‘Pompe: A rare disease”.

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Genetic testing: Everything you need to know

The results of genetic tests are not always straightforward, which often makes them challenging to interpret and explain. Therefore, it is important for patients and their families to ask questions...

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ORDI Media Statement on RD Policy in Indian Chronicle

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ORDI sees NPRD 2021 lacks focus on ailing patient affordability calls to rely on crowd funding

Disease Profile ORDI sees NPRD 2021 lacks focus on ailing patient affordability calls to rely on crowd funding Our Bureau, Bengaluru Wednesday, April 7, 2021, 12:30 Hrs  [IST] Organization for Rare...

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