Rare Diseases Fund
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Viagra Ingredient Sildenafil May Help Treat A Rare And Fatal Childhood Disease, Leigh Syndrome
A new study finds sildenafil, the active ingredient in Viagra, may improve symptoms of Leigh syndrome, a rare, often fatal childhood disorder. Early findings show better muscle strength, fewer seizures, and improved quality of life.
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RTI Flags Funding Gaps As Rare Disease Patients Hit Financial Limits
The RTI data highlights systemic shortcomings in how financial support is being delivered.
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Union Budget 2026: How Import Duty Exemption On Rare Disease Drugs Could Make Treatments Cheaper
The Union Budget 2026-27 includes customs duty exemptions on drugs and medical foods used to treat seven rare diseases under India's National Policy for Rare Diseases, potentially lowering costs for patients reliant on imported therapies.
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Rare Diseases Affect 1 In 20 Indians: Doctor Explains Why Awareness Is The First Cure
Dr Sudheendra Rao N R from the Organization for Rare Diseases India reveals that approximately 70 million are affected by rare diseases and a majority of them are children.
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UK Women Shoot Nude Calendar To Raise Funds For Friend's Rare Disease Treatment
A UK woman, inspired by a film about a naked calendar, has created her own version to raise funds for treatment for a rare disease which could leave her paralysed.
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Centre Releases Rs 40 Crore For Treatment Of Rare Diseases
The Central Government on Wednesday said that Rs 40 crore has been released to 11 centres of excellence including Rs 10 crore to All India Institute of Medical Sciences (AIIMS) for treatment of rare diseases.
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Delhi High Court Asks Centre To Transfer Unutilised Rs 63 Crore To Rare Diseases Fund
The Delhi High Court Monday said that it expected the Centre to take steps to transfer the unutilised amount of over Rs 63 crore, crowdfunded from the general public for treating an individual suffering from a rare disease, to the rare diseases fund.
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Make Digital Crowd Funding Platform For Rare Diseases "Operational": Court Cautions Centre
The Delhi High Court Wednesday said it would take action for "wilful non-compliance" if the Centre failed to make operational a digital platform for crowd funding of the expensive medicines and treatment for rare diseases.
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Viagra Ingredient Sildenafil May Help Treat A Rare And Fatal Childhood Disease, Leigh Syndrome
A new study finds sildenafil, the active ingredient in Viagra, may improve symptoms of Leigh syndrome, a rare, often fatal childhood disorder. Early findings show better muscle strength, fewer seizures, and improved quality of life.
-
RTI Flags Funding Gaps As Rare Disease Patients Hit Financial Limits
The RTI data highlights systemic shortcomings in how financial support is being delivered.
-
Union Budget 2026: How Import Duty Exemption On Rare Disease Drugs Could Make Treatments Cheaper
The Union Budget 2026-27 includes customs duty exemptions on drugs and medical foods used to treat seven rare diseases under India's National Policy for Rare Diseases, potentially lowering costs for patients reliant on imported therapies.
-
Rare Diseases Affect 1 In 20 Indians: Doctor Explains Why Awareness Is The First Cure
Dr Sudheendra Rao N R from the Organization for Rare Diseases India reveals that approximately 70 million are affected by rare diseases and a majority of them are children.
-
UK Women Shoot Nude Calendar To Raise Funds For Friend's Rare Disease Treatment
A UK woman, inspired by a film about a naked calendar, has created her own version to raise funds for treatment for a rare disease which could leave her paralysed.
-
Centre Releases Rs 40 Crore For Treatment Of Rare Diseases
The Central Government on Wednesday said that Rs 40 crore has been released to 11 centres of excellence including Rs 10 crore to All India Institute of Medical Sciences (AIIMS) for treatment of rare diseases.
-
Delhi High Court Asks Centre To Transfer Unutilised Rs 63 Crore To Rare Diseases Fund
The Delhi High Court Monday said that it expected the Centre to take steps to transfer the unutilised amount of over Rs 63 crore, crowdfunded from the general public for treating an individual suffering from a rare disease, to the rare diseases fund.
-
Make Digital Crowd Funding Platform For Rare Diseases "Operational": Court Cautions Centre
The Delhi High Court Wednesday said it would take action for "wilful non-compliance" if the Centre failed to make operational a digital platform for crowd funding of the expensive medicines and treatment for rare diseases.
