In a recent development, the National Rare Diseases’ Committee and M/s. Sarepta Therapeutics are set to engage in discussions regarding a proposal that seeks to enhance medication access for individuals suffering from rare diseases. This crucial meeting holds the potential to improve the healthcare landscape for those in need. #RareDiseases #NRDC #SareptaTherapeutics
Facts
- State Government of Uttar Pradesh released Rs. 5 lakhs to AIIMS for persons with disabilities.
- Dr. Madhulika Kabra requested to examine and provide necessary aids to Petitioner within 10 days.
- Patients suffering from rare diseases outside Delhi find it inconvenient to travel for infusions.
- AIIMS received the amount from the State Government.
- Dr. Kabra is working on facilitating medication dispatch to local hospitals or CoEs for infusion.
- M/s. Sarepta Therapeutics supplied medicines for 14 patients through AIIMS, New Delhi.
Decision
- A meeting is to be scheduled between the NRDC and M/s. Sarepta Therapeutics
- A proposal has been made by the National Rare Diseases’ Committee to M/s. Sarepta Therapeutics
Case Title: MASTER DRASHTANT JHALA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. JAYDEEP SINGH JHALA Vs. UNION OF INDIA & ANR. (2024:DHC:3871)
Case Number: W.P.(C)-8200/2023
