#NewzHook2019 – Shedding Light on Rare Diseases

Much of our understanding of disability is limited to locomotor and visual disabilities. There is a vast community of caregivers, parents and patients battling rare diseases which are barely understood in India. NewzHook’s campaign took readers into the lives of some of these families.

Fragile X Syndrome affects over 40 lakh Indians but guidelines for this condition were launched only in 2019. We looked at the efforts being made to spread awareness by  parents/caregivers alongside helping their loved ones.

From a Facebook group to a nationwide platform
Cure SMA Foundation of India is an example of how effective parent support groups can be.

What do you say about a child who refuses to let Duchenne Muscular Dystrophy (DMD), a severely debilitating condition, come in the way of a consistently brilliant academic performance? Take a bow Karan Singh Anand!

Rushabh Desai, an independent financial advisor has GNE myopathy, a neuromuscular disorder. He shared his journey coping with the diagnosis.

Stigma, misinformation and poor support are some of the major barriers people with rare diseases come up against. When it’s a condition like Rett Syndrome, that mostly affects girls, the walls are that much higher, as the story on Indian Rett Syndrome Foundation tells us.One organisation that is attempting to speak for all patients with rare diseases, it’s the Organisation for Rare Diseases in India (ORDIndia).

From lack of awareness to stigma, patients with, Ataxia, a degenerative disease face challenges on many fronts. We had parents as well as patients share some valuable coping tips.

Pondicherry parent Geetha Narayanswamy wrote in to NewzHook to share her experiences caring for her son Vinayak, who has a rare condition called Sturge Weber syndrome (SWS)

Watch in Sign Language

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• DEPwD directed to frame model guidelines for schools for disabled kids