"साथी" का अर्थ है संगी या हमसफ़र, जो हर कदम पर आपके साथ चलता है। यही भूमिका SMA Saathi निभाता है।
You are not alone on this journeyClear, caring guidance for living with SMA in India
SMA affects muscles, not the person you love. Here you'll find practical help for everyday care, therapy, breathing, feeding, treatments, rights, school, and your own wellbeing, in plain language made for India.
An initiative of the Indian Federation of Neurorehabilitation (IFNR) · ifnr.org
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SMA care in India has changed
An affordable generic risdiplam (Natsmart, ) became available in India in 2025. Government funding, Kerala's KARE scheme, and court orders continue to expand access. With good care (therapy, breathing, feeding, and where possible disease-modifying medicines), many people with SMA live full, connected lives.
Just received a diagnosis of SMA
This is a hard moment. Your feelings (fear, grief, confusion, love) are all valid. This page gives you the first things to know and the first steps to take, at your own pace.
There is no right way to respond to a diagnosis. Shock, grief, anger, and love can all happen at once. Give yourself permission to feel all of it. Thousands of Indian families have walked this road and found their way. Many are willing to talk with you.
1. Take a breath. Understand the diagnosis.
You do not need to process everything today. SMA is a genetic condition that makes muscles weaker over time. It does not affect intelligence, personality, or your ability to love and connect. Go at your own pace.
2. Confirm genetic information
Get the genetic report confirmed. Make sure you have the written genetic test result (SMN1 MLPA or equivalent) and ask the doctor to explain the type (1, 2, or 3) in plain terms for your child or yourself.
3. Ask about SMN2 copy number
Your genetic report should also state the SMN2 copy number: a backup gene that modifies severity. Ask your doctor to explain what the number means for this specific situation. See .
4. Find an SMA-experienced team
Ask for a referral to a multidisciplinary SMA team or Centre of Excellence (CoE). Early specialist input makes a real difference. Use to see NPRD-designated centres by state.
5. Discuss disease-modifying treatment
Ask specifically about disease-modifying treatment. Risdiplam (including generics), nusinersen, and, for eligible infants, onasemnogene abeparvovec are discussed in India. Early treatment discussion matters: do not wait to ask. See .
6. Establish respiratory care
Respiratory care starts early, even when breathing seems fine: preventing problems matters more than waiting for them. For type 1 especially, this is one of the most urgent priorities. See .
7. Establish a nutrition / swallowing plan
Feeding and swallowing assessment protects against silent aspiration and supports growth. See and .
8. Start rehabilitation
Physiotherapy and positioning guidance begins as soon as possible to keep joints comfortable and support posture. Use the to prepare topics for your first therapy appointment.
9. Understand disability documentation
A UDID (Unique Disability ID) card opens access to reservations, travel concessions, ADIP devices, and NPRD funding. See .
10. Connect with support organisations
🇮🇳 India-specific: your first calls
Cure SMA India: · ·
ORDI rare disease helpline: ·
Cure SMA India runs free newly-diagnosed counselling and can help you navigate treatment access and NPRD funding.
You are not alone. Connect with other families who have walked this road. Start a simple folder of every report, prescription, and test result; you will share these with many doctors, and one place saves time and stress.
On language
Doctors may use words like "non-sitter," "sitter," or "walker" to describe how SMA affects movement. Non-sitter (usually type 1) means the person cannot sit without full support; sitter (type 2, some type 3) means can sit but not walk independently; walker (ambulant type 3) means can walk with support. These categories guide care. They do not define a person.
For caregivers and parents
- You could not have prevented this. SMA is genetic, not caused by anything you or anyone did.
- Learning takes time. You don't need to understand everything today.
- Find one or two trusted people (a friend, a Cure SMA India family peer) to talk with honestly.
- Ask about sibling and carrier testing: see the for what this means.
Quick first checklist
- Confirm written genetic diagnosis, SMA type, and SMN2 copy number with your doctor
- Ask for CoE/multidisciplinary team referral
- Ask specifically about disease-modifying treatment
- Call Cure SMA India:
- Start a folder of all reports and results
- You are not alone. Connect with other families
Disease-modifying treatments for SMA in India
Three medicines can change the course of SMA. Below is what is available in India, what they cost, and how to access funding. This information changes fast: always verify with your doctor and Cure SMA India before acting.
Last updated: June 2025Treatment decisions are made with your clinical team
This page explains treatment options and India access pathways for education and appointment preparation. It does not recommend a particular treatment for any individual. Treatment decisions should be made together with an SMA-experienced clinical team, weighing SMA type, age, functional status, SMN2 copy number, and personal circumstances that this page cannot know.
Important: costs and access change rapidly
Treatment costs, court orders, and government schemes in India are changing quickly. Some of the information below reflects late 2024 / 2025 developments. Verify every figure and programme with your care team and Cure SMA India before making decisions. The Supreme Court is hearing the National Rare Diseases Fund case with a final hearing expected in 2026.
Each option below separates three different kinds of information. Use the tabs: Clinical information (what it is, generally, worldwide), India access (regulatory/funding pathway in India), and Current availability (cost and supply right now, the most time-sensitive tab).
Risdiplam: Evrysdi® (Roche) & generic equivalents
Oral daily liquid · Ages 2 months and above · All SMA types
What it is: a small-molecule drug taken by mouth. How it works: helps the body produce more functional SMN protein by modifying SMN2 gene splicing. Route: oral liquid (by mouth or feeding tube). Frequency: once daily, at home. Who may be considered: infants from 2 months and people of any age with SMA. Final suitability is assessed by your neurologist. Monitoring: as advised by your prescribing team. Limitations: requires consistent daily dosing; long-term outcome data continues to accumulate.
Approved by India's Drug Controller General (DCGI) in 2020 and commercially launched in 2021, the first disease-modifying SMA treatment with full Indian marketing approval. Prescribing requires an SMA-experienced physician.
Generic Risdiplam: Natsmart® (Natco Pharma)
Same active medicine · Manufactured in India · Hyderabad-based Natco Pharma
Same active pharmaceutical ingredient (risdiplam) as Evrysdi: the clinical profile above applies. Discuss any switch between brands with your prescribing physician.
The generic Confirm the current legal and commercial status with Cure SMA India or a legal/regulatory source before relying on it. This is not yet a final ruling.
Nusinersen: Spinraza® (Biogen)
Intrathecal injection (into the spinal canal) · All ages · Requires specialist centre
What it is: an antisense oligonucleotide. How it works: modifies SMN2 gene splicing to increase functional SMN protein. Route: intrathecal injection (into the fluid around the spinal cord), performed by a specialist. Frequency: 4 loading doses over the first two months, then one maintenance dose every 4 months. Who may be considered: assessed individually by an SMA-experienced neurologist; requires a centre able to perform intrathecal administration, including for people with spinal fusion/scoliosis surgery. Monitoring: per treating centre protocol.
India's named humanitarian access route, Biogen's SIPHAP (Spinraza Individual Patient Humanitarian Access Program), run through AIIMS New Delhi, SGPGI Lucknow, KEM Hospital Mumbai and Baptist Hospital Bangalore, was a time-limited pilot that closed applications in July 2019 and selected only 25-30 patients globally; it does not appear to be currently active. Nusinersen access today is more likely to be discussed as commercial/import access at a Centre of Excellence, alongside the oral (risdiplam/Natsmart) and gene-therapy (Zolgensma) options above. Ask your neurologist and Cure SMA India what access route currently applies: do not assume SIPHAP is still open. Verified 23 Aug 2026: corrects "CMC Vellore" (not a SIPHAP centre) and confirms the programme's 2019 pilot status.
Onasemnogene abeparvovec: Zolgensma® (Novartis)
One-time gene therapy · Typically for children under 2 years · IV infusion
What it is: a one-time gene therapy. How it works: delivers a working copy of the SMN1 gene using a viral vector. Route: single intravenous infusion. Who may be considered: generally evaluated for pre-symptomatic or early-symptomatic infants under a specific age threshold set by the treating centre/regulator. Ask your neurologist whether this specific person could be eligible. Monitoring: close monitoring (including liver function) is required after infusion per the treating centre's protocol. Limitations: a strict age/weight window generally applies; not appropriate for everyone.
Zolgensma has Indian regulatory approval per prior reporting. Historically, some Indian children accessed it through Novartis's global managed access programme (gMAP); Novartis's own programme page confirms gMAP stopped taking new patient requests by end of July 2024, with the last allocated patient treated by December 2024, and the programme is now closed worldwide. Novartis states it is instead "working to develop concepts for sustainable partnerships" in countries lacking access, with no India-specific timeline given. Assume gMAP is not an option and ask Cure SMA India about current commercial or government-procurement routes. Verified 23 Aug 2026: Novartis gMAP programme page.
Government funding: National Policy for Rare Diseases (NPRD) 2021
🇮🇳 NPRD at a glance
- SMA is classified Group 3 under NPRD 2021: "definitive treatment available, very high cost."
- Financial assistance cap: per patient (raised in 2024) for treatment at a designated Centre of Excellence.
- The Delhi High Court (October 2024) directed the Union Government to allocate ₹974 crore to a National Fund for Rare Diseases, criticising that only ₹7.2 crore of the available budget had been spent. The government appealed to the Supreme Court instead of complying. As of the most recent hearing (7 Nov 2025), no interim relief has been granted and no fund has been disbursed; the next hearing is scheduled for March 2026. Verified 23 Aug 2026: Global Health Now, Nov 2025 reporting.
- Customs duty waiver: SMA medicines imported for personal use are exempt from Basic Customs Duty and IGST (Customs notification, 30 September 2021).
- To access NPRD funding, get referred to a designated CoE by your district hospital or neurologist.
Kerala KARE scheme
Kerala launched India's first state-level rare disease scheme, KARE (Kerala United Against Rare Diseases), in February 2024, with ₹30 crore allocated. SAT Hospital Thiruvananthapuram was upgraded to a CoE. Coverage initially ran to age 12; on 2 March 2026 the Kerala Health Department extended free risdiplam coverage to age 25, expected to bring roughly 80% of the state's identified SMA patients into eligibility. If you live in Kerala, ask your paediatrician or neurologist about KARE eligibility. Verified 23 Aug 2026: Kerala Health Department press releases.
Questions to ask at a treatment appointment
Check off what you've covered. You can print or share this list before your appointment.
Designated Centres of Excellence
Treatment under NPRD funding must happen at a CoE. Referrals can be made from any government hospital. Use to filter this list by state and city.
| Centre | Location |
|---|---|
| AIIMS New Delhi | Delhi |
| Maulana Azad Medical College | Delhi |
| SGPGIMS | Lucknow, UP |
| PGIMER | Chandigarh |
| CDFD / NIMS | Hyderabad |
| KEM Hospital | Mumbai |
| IPGMER | Kolkata |
| Centre for Human Genetics / Indira Gandhi Hospital | Bengaluru |
| Institute of Child Health | Chennai |
| AIIMS Jodhpur | Jodhpur, Rajasthan |
| SAT / Government Medical College | Thiruvananthapuram, Kerala |
| AIIMS Bhopal | Bhopal, MP |
Quick summary
- Risdiplam (oral, daily) is DCGI-approved: Roche Evrysdi and Natco Natsmart generic both available
- Natsmart generic costs
- Nusinersen via humanitarian access; Zolgensma for under 2s (limited access)
- NPRD offers per patient at a CoE; customs duty waiver on personal imports
- Kerala KARE scheme covers patients up to age 25 in Kerala
- Contact Cure SMA India for the most current access guidance:
Your rights and financial help in India
SMA qualifies for disability rights, government schemes, and tax benefits. Knowing these can reduce financial pressure and open up support. A step-by-step guide, from disability certificate to crowdfunding.
Step 1: Get a disability certificate & UDID card
- Visit a District Medical Board (usually at a District / Civil Hospital) for assessment
- SMA qualifies under "Muscular Dystrophy" or "Chronic Neurological Conditions", both listed disabilities under the RPwD Act 2016
- The Board gives a percentage: 40% or more ("benchmark disability") is required for most schemes
- The UDID card can be applied for online at swavlambancard.gov.in after assessment
- Bring medical reports, genetic test results, and a referral letter from your neurologist/paediatrician
What the UDID / RPwD Act gives you
Jobs & education
in government jobs and higher-education seats for persons with benchmark disability. Scholarships from Dept of Empowerment of Persons with Disabilities.
Income tax deduction (§80U)
₹75,000 deduction for 40-79% disability; ₹1,25,000 for severe (80%+) disability, under the old tax regime. Claim via Form 10-IA signed by a specialist.
Railways & travel
Concessions on train fares (up to 75% in some classes) and reserved accessible coaches. Carry your UDID card. Check indianrailways.gov.in for current rates.
ADIP scheme: free devices
Assistive devices (wheelchairs, AFOs) free or subsidised through ALIMCO, Composite Regional Centres and camps. Motorised wheelchair generally requires 80%+ disability. Ask your District Disability Rehabilitation Centre.
Step 2: NPRD funding at a Centre of Excellence
- Get a referral letter from your neurologist or paediatrician to a designated CoE (see Treatments page for the full list of 12 CoEs).
- At the CoE, the team registers you under the NPRD rare disease fund.
- The cap covers treatment costs at the CoE. Your treating doctor and the hospital finance team will handle the paperwork.
- If cost exceeds the cap (which it does for nusinersen and Zolgensma), the CoE may help you apply for additional crowdfunding or CSR/NGO support alongside NPRD.
Kerala KARE scheme
If you live in Kerala: ask your paediatrician or neurologist about KARE (Kerala United Against Rare Diseases), launched February 2024. The scheme initially covered SMA patients up to age 12; on 2 March 2026 the Kerala Health Department extended free risdiplam coverage up to age 25, expected to bring roughly 80% of Kerala's identified SMA patients into eligibility. Distribution is based on genetic testing and an expert committee's recommendation. Verified 23 Aug 2026: Kerala Health Department press releases.
Customs duty waiver (for imported SMA medicines)
SMA medicines imported for personal use are exempt from Basic Customs Duty and IGST under a Customs notification dated 30 September 2021. If you are importing from abroad, carry a copy of the notification and your prescription.
Crowdfunding: a practical reality
🇮🇳 Major crowdfunding platforms used by Indian SMA families
- Ketto (ketto.org): largest medical crowdfunding platform in India; many SMA campaigns
- Milaap (milaap.org): strong rural reach, can receive international donations
- ImpactGuru (impactguru.com): partnered with hospitals including Apollo, Fortis
Cure SMA India can help you set up a campaign and reach a wide network. Contact them first: they have experience guiding families through this process.
CSR and NGO support
Several Indian corporations fund SMA treatment through Corporate Social Responsibility (CSR) obligations — for example, the Free Medicine Access Programme (F-MAP), a CSR-funded partnership between the Care and Protection of Children Trust, Roche Pharma India, and Indira Gandhi Institute of Child Health (Bengaluru), currently provides free lifelong access to risdiplam for eligible children in Karnataka. Cure SMA India, ORDI, and specialist hospitals can help families locate and apply to whichever such programmes are currently open.
Quick rights & finance checklist
- Apply for UDID card at swavlambancard.gov.in: unlocks reservations, travel, ADIP devices
- §80U tax deduction: ₹75K (40-79%) or ₹1.25L (80%+) under old tax regime
- NPRD: ₹50L cap at a CoE, get a referral from your neurologist
- Kerala? Ask about KARE scheme at SAT Hospital Thiruvananthapuram
- Customs duty waiver for imported SMA medicines (Sept 2021 notification)
- Crowdfund: Ketto, Milaap, ImpactGuru; Cure SMA India can help guide you
Genetics & testing in India
Understanding the gene behind SMA, what tests confirm it, and what they cost in India.
SMN1 and SMN2
- SMN1 is the main gene: in SMA, both copies are deleted or not working.
- SMN2 is a backup gene. Everyone has 1-4+ copies. More copies of SMN2 generally means milder SMA, though it is not a simple formula.
- Your genetic report will usually state "SMN1 homozygous deletion" and how many SMN2 copies were found. Ask your doctor to explain what this means for your specific situation.
The diagnostic test
The standard test is called MLPA (Multiplex Ligation-dependent Probe Amplification). It is a blood test that detects the SMN1 deletion and counts SMN2 copies. Results usually take 2-4 weeks.
🇮🇳 Cost in India (approx, verify locally)
- SMN1 MLPA at commercial labs (e.g. Redcliffe, Neuberg, SRL): approximately ₹6,700-₹20,000 depending on lab and whether NGS panel is included
- Available at most tertiary hospitals and commercial genetic labs across India
- At NPRD Centres of Excellence, diagnostic testing may be subsidised or free
Carrier testing
A carrier has one working copy of SMN1 and one that is deleted or changed. Carriers do not have SMA but can pass the gene on. In North India, approximately 1 in 30-38 people are SMA carriers, higher than the global average of 1 in 50. This is why carrier testing matters for family planning.
- If one parent has a child with SMA, both parents are almost certainly carriers
- If both parents are carriers, each pregnancy has a 1 in 4 (25%) chance of SMA, 2 in 4 of being a carrier, and 1 in 4 of being unaffected
- Carrier testing by MLPA is available at commercial labs for approximately ₹6,700-₹15,000
- A genetic counsellor can explain options including prenatal testing and pre-implantation genetic testing (PGT) for future pregnancies
Newborn screening
Newborn screening (NBS) tests babies at birth before symptoms appear, giving the best chance for early treatment. Early treatment gives dramatically better outcomes. India does not currently have a national newborn screening programme for SMA. Pilot research is underway at some centres (e.g. AIIMS Jodhpur). Kerala's KARE scheme emphasises early detection. Advocate for NBS through Cure SMA India and ORDI.
Quick summary
- SMN1 MLPA blood test confirms SMA: costs ~₹6,700-₹20,000 in India
- SMN2 copy number modifies severity: ask for it in your report
- Carrier frequency in India: ~1 in 30-38 (North India data)
- Carrier testing available at commercial labs; 1 in 4 chance of SMA if both parents are carriers
- India has no national newborn screening for SMA yet: early diagnosis depends on awareness
Carriers of SMA
Being a carrier means you carry one changed copy of the SMN1 gene. You are healthy, but you can pass it on. Here is what this means and what your options are.
How SMA is inherited
- SMA is autosomal recessive: you need to inherit the changed gene from both parents to have SMA
- If only one copy is changed, you are a carrier: healthy, but able to pass the gene on
- Most carriers have no family history of SMA: the gene can be carried silently for generations
Who should consider carrier testing?
- Parents of a child with SMA (almost certainly both carriers)
- Siblings of a person with SMA
- Extended family where SMA is known
- Anyone planning a pregnancy where there is family concern
🇮🇳 India context: higher carrier frequency
Research in North India found approximately 1 in 30-38 people carry the SMA gene, higher than the global figure of 1 in 50. Carrier testing by MLPA costs approximately ₹6,700-₹15,000 at commercial labs. A genetic counsellor can explain results and options. Ask your doctor for a referral to a medical geneticist at a CoE or genetics lab.
Options for future pregnancies
- Prenatal testing: Chorionic villus sampling (CVS) at 10-13 weeks or amniocentesis at 15-20 weeks can test the baby
- Pre-implantation genetic testing (PGT-M): available at some IVF centres in India, where embryos are tested before implantation. Expensive and not universally available; ask a reproductive geneticist
- Continue naturally and test early: some families choose to know early in pregnancy and plan care
- A genetic counsellor will listen to your values and explain all options without pressure
Quick summary
- Being a carrier means one SMN1 copy is changed: you are healthy
- If both parents are carriers: 1 in 4 chance SMA with each pregnancy
- India carrier frequency: ~1 in 30-38 (higher than global average)
- Carrier testing available at commercial labs (~₹6,700-₹15,000)
- Ask for a genetic counsellor: they can explain options without pressure
Living in India with SMA
Practical guidance shaped by Indian realities: joint families, monsoon, heat, transport, community health workers, and home-based care with simple resources.
Home-based care with simple resources
- Rolled cotton bedsheets or towels: use for side-lying positioning to support the spine
- Firm pillows or folded quilts (raza'is): support the trunk and limbs in a comfortable position
- Plastic chair with armrests: add a folded towel as a seat cushion; raise with a wooden block under the legs if needed
- Tray fixed to a chair: lets the person rest their arms while eating, writing, or using a phone
- Ask your physiotherapist to show you specific techniques for your person: never copy routines from videos without professional guidance
Joint-family caregiving
India's joint-family structure is one of the greatest strengths in home SMA care. Multiple family members can share caregiving tasks, reducing burnout on any one person.
Making joint-family care work well
- Train as many family members as possible in safe positioning, transfers, and the person's daily routine
- Rotate caregiving duties: heavy tasks like bathing, transfers, and airway clearance should not fall on one person every day
- Hold a short weekly family discussion about how care is going and who needs rest
- The person with SMA should be involved in decisions about their own care: even young children can share preferences
Community health workers: ASHAs and ANMs
For families in rural areas or far from specialist centres, ASHA workers and ANMs (Auxiliary Nurse Midwives) can be a bridge between home and the healthcare system.
- Ask your ASHA to help with vaccination schedules: annual influenza vaccine, pneumococcal vaccine, are important for SMA
- ANMs can monitor weight and growth, and refer to the district hospital if concerns arise
- Ask Cure SMA India whether community worker training is available in your area
Monsoon and heat management
Monsoon: higher infection risk
- Chest infections are more common in damp, humid months: watch for cough, fever, and breathing changes more closely
- Keep cushions, orthoses, and mattresses dry: damp foam causes skin and fungal problems
- Protect powered wheelchairs and electronic communication devices from rain
- Increase the frequency of position changes if the person is sweating: skin stays drier and healthier
Summer and heat care
- Keep the person well hydrated: offer small sips of water or approved liquids throughout the day
- Use breathable, light cotton clothing; avoid thick synthetic materials against the skin
- Check that wheelchair vinyl and metal seating surfaces are not dangerously hot before the person sits down
- Shade, fans, or air conditioning significantly reduce heat stress: use what you have
- Dehydration can make mucus thicker and harder to clear, another reason to keep fluids up
Transport and accessibility
- Indian Railways: Disability concessions are available for persons with a UDID card, up to 75% fare concession in some classes. Accessible coaches (usually coach H1/S1) are available on most routes; book in advance and notify station staff. Visit indianrailways.gov.in for current rates.
- Local accessible transport: availability varies widely and purpose-built wheelchair-accessible vehicles are not the same as ordinary taxi apps' e-rickshaws (which are not accessibility-equipped). Confirmed active options include Mobility India's wheelchair taxi service in Bengaluru and Ezy Mov, which runs wheelchair-accessible taxis and e-rickshaws in Mumbai and other cities.
- Air travel: DGCA mandates that airlines accommodate persons with disability. Request a wheelchair and assistance when booking, and confirm at check-in.
- The Accessible India (Sugamya Bharat) campaign is retrofitting public buildings; implementation is incomplete in many areas. Plan ahead and call ahead.
Language and multilingual support
SMA Saathi is now available in Hindi, Marathi, Bengali, Tamil, Telugu, Kannada and Malayalam, alongside English, covering navigation, key pages and topic summaries. Gujarati is next on the roadmap. Ask Cure SMA India for translated booklets: they produce patient materials in regional languages.
Quick summary
- Rolled towels, firm pillows, and household chairs can support most home positioning
- Share caregiving across the joint family to prevent burnout
- ASHAs and ANMs can help with vaccinations and monitoring in rural areas
- Monsoon: heightened infection risk. Watch breathing closely and keep equipment dry
- UDID card gives railway concessions and accessible-travel priority
When to seek urgent help
Most days with SMA are ordinary days. This page is here so you recognise the small number of signs that need fast action, not to make every day feel frightening.
⚠ Call 112 or go to the nearest hospital immediately if you see:
- Difficulty breathing, or breathing that looks much harder than usual
- Blue or grey lips, tongue, or fingertips (cyanosis)
- Unable to clear secretions/mucus despite usual cough-assist technique
- Choking, or a swallowing difficulty severe enough that nothing is going down safely
- Unusual reduced responsiveness, unresponsiveness, or extreme drowsiness that is not normal sleep
- Signs of significant dehydration (very little urine, sunken eyes, extreme lethargy)
- Any rapidly worsening breathing symptoms, especially with fever
Non-urgent, but worth a call to your care team soon
- A cold or mild cough that is lasting longer than usual, or coming with more tiredness than usual
- A new or increasing curve in the back, or new joint stiffness
- Reduced appetite or slow weight gain over several weeks
- Skin redness at a seating or bracing contact point that is not settling
- Low mood, withdrawal, or exhaustion lasting more than two to three weeks (see )
Individual emergency plans
Every person with SMA is different. Ask your treating team (ideally your Centre of Excellence or respiratory physician) to write a short, individual emergency/action plan naming this person's specific warning signs, their usual baseline, and exactly what to do. Keep a copy at home, in a travel bag, and with the school or workplace.
SMA Rehabilitation Planner
Tick what currently applies. You'll get a list of topics organised by discipline to raise with your rehabilitation team, not a prescription. Nothing here tells you what exercises to do or how often; only your assessed therapist can do that.
Find an SMA centre Coming soon
Centres currently designated under India's National Policy for Rare Diseases (NPRD) can support referral, treatment access, and funding. Confirm current SMA-specific services directly with the centre or with Cure SMA India before travelling.
This directory is being reviewed before launch
The centre list here is drawn from the NPRD-designated Centre of Excellence list cited on this site's Treatments page, but hasn't been independently re-verified centre by centre for this build. Rather than publish a searchable directory that might list stale or unconfirmed details, we're holding it back until that review is done. In the meantime, for the current CoE list, or contact Cure SMA India directly for centre guidance.
Evidence & sources
Every category below is a placeholder structure ready to receive verified references. Where a source is not yet independently verified with a live link, it is marked clearly rather than presented as confirmed.
Privacy
What this site stores, and where
- Text size and high-contrast preference: stored only in your own browser's local storage on this device, so your setting is remembered next visit. It never leaves your device and SMA Saathi cannot see it.
- Rehabilitation Planner selections: held only in this browser tab's memory while the page is open. Nothing is saved, transmitted, or stored once you close or reload the page. Printing or saving as PDF is done by your own browser/device, not by SMA Saathi.
- No accounts, no analytics cookies, and no health data are sent to any server in this version of the site. If a future version adds analytics or accounts, this page will be updated first and consent will be requested where required.
How to clear stored preferences
Use your browser's site settings to clear local storage/site data for this site, or use the accessibility bar to reset text size and turn off high contrast; this overwrites the stored preference immediately.
Why we designed it this way
SMA Saathi's planning tools can involve sensitive personal health information. Keeping this information in-browser only, with no backend storage, avoids creating a database of personal health information before one is genuinely needed and properly secured.
This is a prototype privacy statement. Before public launch it should be reviewed against the Digital Personal Data Protection Act 2023 (India) and any applicable healthcare data guidance; see Manual Content Required in the project handover documents.
Frequently asked questions
Resources & support organisations
Key organisations in India
Cure SMA India
🌐
📞
✉️
Parent-led organisation. Newly-diagnosed counselling, multidisciplinary clinics in , patient registry, assistive-device support, and treatment access guidance. Contact details verified 23 Aug 2026 against curesmaindia.org.
Organisation for Rare Diseases India (ORDI)
🌐
📞 (Rare Disease Helpline)
✉️
Umbrella body for rare diseases in India. Runs India's national Rare Disease Helpline and the Rare Disease Care Coordination Centre. Contact details verified 23 Aug 2026 against ordindia.in.
Indian Organization for Rare Diseases (IORD)
🌐 rarediseases.in
National not-for-profit supporting rare disease patients and families since 2005.
Indian Federation of Neurorehabilitation (IFNR) Project Partner
🌐 ifnr.org
National professional body for neurorehabilitation in India, bringing together physiatrists, neurologists, and rehabilitation therapists. SMA Saathi is developed as an IFNR project, drawing on neurorehabilitation expertise for clinical accuracy.
Government portals
UDID / Disability certificate
Apply at swavlambancard.gov.in after assessment by a District Medical Board. Free.
NPRD Centres of Excellence
Rare disease treatment under the National Policy, currently 15 designated Centres of Excellence nationwide (including AIIMS Delhi, SAT Hospital Thiruvananthapuram, and PGIMER Chandigarh); full list and Office Memorandums published under the Rare Disease Cell at rarediseases.mohfw.gov.in. Referral needed from your neurologist. Verified 23 Aug 2026: IORD summary of MoHFW Office Memorandums.
ADIP scheme: assistive devices
Free/subsidised wheelchairs and equipment through ALIMCO and District Disability Rehabilitation Centres. Ask your district hospital or call 1800-180-5129 (ALIMCO toll-free, 8am-8pm). Verified 23 Aug 2026: alimco.in.
Printable guides
Questions for your doctor
Print this page and take it to your next appointment.
Daily care checklist
Positioning changes, breathing watch-points, skin checks, feeding reminders.
School support plan template
A simple form to agree accommodations with teachers.
Contact & support
Medical emergency? Sudden breathing trouble, blue lips, choking, unresponsiveness: call 112 or go to the nearest hospital immediately. Do not wait for an email reply.
Contact SMA Saathi: an IFNR Project
🌐 ifnr.org
For questions about this site, content corrections, partnership enquiries, or to share feedback. We aim to reply within 24 working hours.
Cure SMA India: newly diagnosed & support
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Clinics in . Newly-diagnosed counselling, peer connection, treatment access guidance.
ORDI: Rare Disease Helpline
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India's national rare disease helpline. Can help with service navigation and rights.
For professionals
Therapists, teachers, and care workers: the topic pages on this site are written to be useful to professionals too. Reach us at ifnrsaathi@gmail.com to share feedback or request resources.
A note on this site's content
All content on SMA Saathi is reviewed for evidence alignment, but this site is not a substitute for individual clinical advice. All costs, helplines, and government schemes should be verified before acting: they change frequently. All medical content on SMA Saathi has been reviewed and confirmed by 9 independent IFNR members, 16 September 2026.
Terms of Use
These Terms of Use govern your access to and use of SMA Saathi, a patient-education project of the Indian Federation of Neurorehabilitation (IFNR). By using this site, you agree to these terms.
1. Educational purpose only
All content on this site — including text, illustrations, checklists and any interactive tools — is provided for general educational and informational purposes only. It is not medical advice, and using this site does not create a doctor-patient relationship between you and IFNR, its members, or any contributor.
2. Not a substitute for professional care
Always seek the advice of a qualified physician or other healthcare provider for any questions about a diagnosis or treatment. Never delay or disregard professional medical advice because of something you have read here. If you believe you have a medical emergency, contact your local emergency services immediately.
3. Accuracy and no warranty
IFNR aims to keep this content accurate and current, and each page shows its review status. However, medical knowledge, government schemes and organisation details change over time, and we make no warranty — express or implied — that any information on this site is complete, current or error-free. Content is provided "as is."
4. Third-party organisations and links
This site may reference or link to government schemes, hospitals, NGOs and other third-party organisations. IFNR does not control these organisations and is not responsible for their content, services, availability or any outcome of contacting them. Inclusion of an organisation is not an endorsement.
5. Acceptable use
You agree not to misuse this site — for example, by attempting to disrupt it, scrape it at scale, misrepresent its content, or use it for any unlawful purpose.
6. Intellectual property
Unless stated otherwise, the content, design and branding of this site belong to IFNR. You may share and reference this content for personal, non-commercial, educational use with attribution; contact IFNR for any other use.
7. Limitation of liability
To the fullest extent permitted by law, IFNR and its contributors are not liable for any loss or damage arising from your use of, or reliance on, this site.
8. Governing law
These terms are governed by the laws of India.
9. Changes to these terms
IFNR may update these terms from time to time; the "last updated" date below reflects the most recent version.
Questions about these terms: ifnrsaathi@gmail.com
This is a general-purpose Terms of Use drafted to cover a health-information website. It has not yet been reviewed by a lawyer and should be checked against the Digital Personal Data Protection Act 2023 (India) and any other applicable law before being treated as final.
Last updated: 14 September 2026.