Patient Support, Registries & Care Centers

[Genetic Counselor]

Patient Support, Registries & Care Centers — ORD India, DART & RDCCC Network

[Genetic Counselor]

For families looking for support beyond trial participation:

ORD India (Organization for Rare Diseases India) — primary patient advocacy body for DMD in India.
Helpline: +91 8892 555 000 | Email: contactus@ordindia.in
Runs Rare Disease Care and Cure Centers (RDCCC) in Bengaluru & Mysore (Karnataka), plus Kerala, Tamil Nadu, Telangana, and Delhi (including AIIMS partnership).
Offers an E-Library (“Rare Info Series,” neuromuscular disorder sessions), DMD patient leaflets, webinars, and a patient-story section.
DART India (Bengaluru) — beyond running the ASO trial above, also provides counseling, medical advisory, and rehabilitation support independent of trial enrollment.

References:

ORD India — DMD page, https://ordindia.in/diseases/duchenne-muscular-dystrophy-dmd/
DART India, https://www.karnataka.com/ngos/dart-dystrophy-annihilation-research-trust/

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