- This topic has 1 reply, 1 voice, and was last updated 2 weeks, 5 days ago by
.
-
Posts
-
-
-
Two organizations are worth registering with even before starting any treatment or trial process — both can help with care coordination and future trial-matching, and both maintain up-to-date information that moves faster than any static post can:
CureSMA (CureSMA Foundation of India) — the primary SMA-specific patient advocacy and support organization in India.
• Helpline: +91-7878551885
• Email: info@curesmaindia.org
• Services: newly-diagnosed family counseling, a patient registration system with programs tailored to specific SMA types, SMA camps, multidisciplinary management guidance (physiotherapy, occupational therapy, nutrition), and equipment/home-modification guidance.
• Advocacy track record: CureSMA played a documented role in bringing Risdiplam to the Indian market and continues to advocate for broader drug accessibility — they are a good first call if you’re trying to find out what financial-assistance or access programs are currently open.ORD India (Organization for Rare Diseases India) — a broader rare-disease advocacy body that also maintains an SMA-specific resource page.
• Helpline: +91 8892 555 000
• Email: contactus@ordindia.in
• Runs Rare Disease Care and Cure Centers (RDCCC) across Karnataka (Bengaluru, Mysore), Kerala, Tamil Nadu, Telangana, and Delhi.
• Maintains Centres of Excellence (CoE) listings relevant to the NPRD 2021 financial assistance scheme discussed in Topic 5, plus a patient application form and clinical-trial-update section.
Registering with both is not redundant — CureSMA is disease-specific and closer to the treatment-access advocacy work, while ORD India’s CoE and RDCCC network is more relevant if you’re trying to access NPRD funding or a broader rare-disease care center near you.References:
• CureSMA India — https://www.curesmaindia.org/about-us/
• ORD India — SMA page — https://ordindia.in/diseases/spinal-muscular-atrophy-sma/
-
- You must be logged in to reply to this topic.