He, however, pointed out that the medicines required for such conditions can be extraordinarily expensive because they often involve years of research and development and have to be administered over prolonged periods, sometimes for a decade or even throughout a patient’s lifetime. According to Kakati, patients with rare diseases cannot be managed through conventional hospital services because both diagnosis and treatment require specialised expertise.

“Treating these patients with rare health conditions at general hospitals is not possible because the diagnosis process is complex and, after diagnosis, the treatment is also difficult. For Assam and the North East, where patients often cannot travel to other parts of the country for treatment, this is of utmost importance,” he said.

As part of the initiative, the institution is also preparing to strengthen its diagnostic capabilities. AMCH plans to establish an advanced integrated diagnostic laboratory with modern gene-sequencing facilities, along with a network-based system for cross-disciplinary medical testing, evaluation and clinical services.

The Central government has approved Rs 5 crore for the facility, which the institution hopes to establish by the end of this year. Kakati said the diagnostic facility would help improve the identification of patients, but treatment could not be held back until the laboratory became operational.

“We have already received an allotment for medicines. If we wait for the diagnostic laboratory alone, treatment for those diagnosed and confirmed will be delayed,” he said.

For families who have lived with the financial and emotional burden of rare diseases, the beginning of treatment at AMCH has already brought a sense of relief. Sarmistha Pritam Baruah, an author and poet who is an SMA patient from Nagaon, said she spent several years without treatment, and even after medicines became available, their high cost put them out of reach.

“When treatment was discovered for the disease, we were happy, but at the same time we were not, because for common people like us, the cost of the medicine is extremely high and not affordable,” she said. She recalled that the initial years of treatment alone could require around Rs 72 lakh, an amount impossible for her family to bear.

The launch at AMCH, therefore, represents more than the start of another specialised medical service. For patients like Baruah, it marks the arrival of an institutional support system for conditions that have historically received limited attention and for families who have often had to confront rare diseases with little access to affordable treatment.

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