People suffering from the rare disease have appealed to the Karnataka Government to release funds for treatment.
 

The State Government had initially provided a grant of over Rs.4 Crore to Indira Gandhi Institute of Child Health (IGCH) for treatment and it had immensely benefitted from it. However, the treatment was now stopped due to want of funds and the amount confirmed by government order in June has not been released so far, said Mr Prasanna Shirol, Co-Founder & Executive Director, Organisation for Rare Diseases India (ORDI), in a release here on Thursday. He said, "Acting on a PIL, the Karnataka High Court had directed the State Government to provide treatment for rare disease patients. However no funds were released and now the treatment has stopped and the patients are suffering.