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A run to create awareness about rare diseases

Zoyeb Mohamed Zia will participate in the ‘Race for 7’ run on Sunday. He has ataxia, which causes slurring of speech, sluggish eye movements and poor coordination of limbs.

He is an assistant professor in a city college and is just 25.

“There is no cure for such a disease. I can move around only with support and take medications from time to time,” Zoyeb said.

‘Registry needed’

The run is being organised by the Organisation for Rare Diseases India (ORDI) in several cities across the country to raise funds and create awareness for patients.

It will be flagged off at 6.30 a.m. on Sunday from Olcott School in Besant Nagar.

S. Suresh, honorary secretary, Voluntary Health Services, said that what was needed immediately was a registry of such conditions.

“Only then, the government will understand the magnitude of rare diseases. We need policies at the national and State levels. The government should also allocate funds to develop and distribute medications, enzymes for patients,” he added. Ann Gonsalvez, chairperson, Multiple Sclerosis Society (Chennai Chapter), said that since these are medical disabilities, they are not covered under the Rights of Persons with Disabilities Act.

“It covers only physical disabilities. There is a need to sensitise the government in this regard,” she said.

Prasanna Shirol, founder director, ORDI, said besides a lack of access to early intervention and treatment, the cost of treatment, where available, was often prohibitively expensive.

“Corporates, schools and colleges must come forward to create a more inclusive environment for rare disease patients.” Iftikhar Zia, State Cordinator-TN, ORDI, said patients who need help can call the ORDI helpline at +91 8892 555 000. Those willing to participate in the run can register on http://registration.racefor7.com/.

Article source: https://www.thehindu.com/news/cities/chennai/a-run-to-create-awareness-about-rare-diseases/article26334097.ece

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