New campaign reignites search for children with Progeria in India

23 Sep,2019

By A Correspondent

 

Followers of Hindi cinema would know of Progeria as the rare disease afflicting actor Amitabh Bachchan in the film ‘Paa’.

 

The Progeria Research Foundation (PRF; www.progeriaresearch.org) announced the launch of ‘Find the Children – 60 in India with Progeria’ campaign. The campaign is designed to create awareness among the general public and healthcare providers, in order to locate and assist children with this rare and fatal rapid aging condition. The India search calls for the public’s help in finding undiagnosed children with Progeria, so they can have access to treatment and healthcare guidelines that can give them longer, more active lives.

 

Said Audrey Gordon, President and Executive Director of PRF: “In order to help the children, we have to find them. Locating and assisting them is the goal of our international ‘Find the Children’ campaign. Progeria is a very rare disease that many people don’t recognise. And in a vast, diverse, and multilingual country like India, many of these children come from smaller towns and remote villages; so this outreach is vital to finding them.”

 

The Progeria Research Foundation has collaborated with MediaMedic Communications through its exclusive status as India partner in GlobalHealthPR. In the past, MediaMedic helped find Nihal Bitla from Bhivandi, Mumbai, and several others, including children from Chhattisgarh, Bihar, and Madhya Pradesh.

 

Added Dr Leslie B. Gordon, Medical Director of PRF: “We have connected with over a dozen families of children with Progeria in India, and they have become part of the PRF International Progeria Registry, received treatment recommendations, and joined clinical treatment trials. Our goal is to provide these opportunities to every child with Progeria in India. Finding these children and their families is the essential first step to helping them/ All children with Progeria must have the opportunity to benefit from our efforts to find treatments and a cure, so please help us find children with Progeria in India.”

 

 

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