Lack of rare disease centre in Gujarat forces families to travel for treatment

Despite more than two lakh children in Gujarat reportedly suffering from rare diseases, the state is yet to operationalise a dedicated Centre of Excellence (CoE), forcing families to travel to cities such as Mumbai for diagnosis, genetic testing and treatment approvals.

While 15 states across India already have government-recognised Centres of Excellence for rare diseases, Gujarat patients continue to depend on facilities outside the state to access specialised care and financial assistance under the National Policy for Rare Diseases.

According to estimates, one in every 10,000 children born in India is affected by a rare disease. Across the country, nearly nine crore people are living with rare congenital disorders, while around two lakh patients are affected by nearly 7,000 different rare diseases.

Conditions such as Spinal Muscular Atrophy (SMA), Cystic Fibrosis and Hemophilia often require highly specialised and expensive treatment, with certain medicines and injections costing several crores of rupees.

Patients depend on centres outside Gujarat

Under the National Policy for Rare Diseases, the Central Government provides financial support for treatment, medicines, nutrition and related medical expenses. However, patients can access this assistance only after evaluation and approval at authorised Centres of Excellence.

Families from Gujarat currently travel to recognised centres in other states—particularly Mumbai—for diagnosis, genetic testing and treatment approvals. Only after assessment at these centres can eligible patients receive government assistance of up to ₹50 lakh.

Health experts say the absence of a Centre of Excellence in Gujarat increases both financial and logistical pressure on families already dealing with serious medical conditions.

They say a state-level centre would make diagnosis, treatment and approvals more accessible while also speeding up access to financial assistance ranging from ₹10 lakh to ₹40 lakh under various government schemes.

What a Centre of Excellence provides

A Centre of Excellence for rare diseases typically requires a super-speciality hospital with specialist doctors, advanced genetic testing laboratories, rehabilitation support systems and research facilities.

Under the current process, patients must first register through a government hospital or authorised referral centre. Specialists then conduct medical examinations and genetic testing, if required, before treatment assistance is approved.

Financial assistance is generally routed directly to government hospitals or recognised Centres of Excellence, although some cases are handled through reimbursement mechanisms.

Some of the commonly reported rare diseases in India include Thalassemia, Cystic Fibrosis, Hemophilia and Spinal Muscular Atrophy.

Government-approved Centres of Excellence currently operate at institutions including AIIMS Delhi, PGIMER Chandigarh, Sanjay Gandhi Postgraduate Institute of Medical Sciences in Lucknow, KEM Hospital in Mumbai, Christian Medical College in Vellore and AIIMS Bhubaneswar.

Gujarat facility expected to begin soon

According to Gujarat Health Department officials, the process of establishing a Centre of Excellence in the state has been completed and the facility is expected to start soon, most likely in Ahmedabad.

Until the facility becomes operational, however, families will continue to face the burden of travelling outside Gujarat for specialised treatment and follow-up care.

Rare diseases often lead to severe and progressive health complications. In conditions such as Spinal Muscular Atrophy, muscles gradually weaken over time, causing difficulty in walking and swallowing and, in severe cases, breathing complications.

Rare diseases are broadly classified into three categories—those treatable through one-time therapy, those requiring long-term treatment and those involving lifelong, high-cost care.

Under central government schemes and the National Health Mission, eligible patients can receive treatment assistance of up to ₹50 lakh.