Progeria – an ultra rare and fatal premature ageing condition is a rare disease. According to estimates there are 200-250 children surviving with this disease in a population of 7.4 billion. In fact few would have known about this disease a few years ago due to lack of information and communication.
In 1999, Scott D. Berns and Leslie Gordon, MD, PhD — together with family, friends and colleagues — formed The Progeria Research Foundation (PRF) after their son, Sam, was diagnosed with Progeria at the age of 21 months.
Progeria US campaign
In 2003, Spectrum, leading health and science PR agency in US and Global Health PR, largest partnership of independent health and science communication firms decided to take the Progeria story global.
This partnership led to the launch of the campaign – “Find the Other 150,” informed Andrew Bailey, Manager GlobalHealthPR, USA while presenting the campaign at the recently concluded DigiSights 2016, Digital Marketing Conference for Pharma & Healthcare.
After listing the challenges, Andrew spoke about the communications approach – “Positioning PRF as the prominent Progeria research organization and drive community members, doctors and families recognize symptoms via news coverage and navigate to PRF website/call hotline to speak with medical team.”
To begin with a website was launched (www.findtheother150.org) to provide materials and referral process for locals in any community to get in touch with PRF and its medical team. Content was accessible in 20+ languages and the campaign was integrated with a strong social media campaign.
During this time PRF collaborated with HBO to talk about the story of Sam Berms. The documentary focused on how Sam a victim of Progeria was like one of us and capable of doing anything.
The documentary got the traditional media talking and the campaign received reach and awareness. “From 54 children in 2009 to 134 children in 2016, 275% increase in children identified with the disease resulting advances of increased 1.6 years in life span,” Andrew highlighted the numbers.
Progeria India campaign
Dinesh Chindarkar, co-founder at Media Medic – a digital agency serving the Pharma market exclusively – joined the stage to talk about the India campaign. It was during one of his trips to the US that he was informed about this campaign, and that cultivated the idea of bringing the movement to India.
Thereafter MediaMedic, India partner of Global Health PR launched its ambitious campaign – #Finding60inIndia.
Nihal, a fighter of this rare disease was the first one to be associated with the campaign, who later on became the face of the campaign as Team Nihal. The campaign backed by social media initiatives got a big boost when a documentary was created with Nihal. This became a starting point for people to get informed and influencers to talk about it.
From print to radio to online portals like The Logical Indian, all came together to spread the word about the campaign. This gave it the much needed reach and boost.
Later on Aamir Khan joined the cause and very recently Honda invited Nihal to the Auto Expo 2016 where he said hello to AISMO, the world’s most advanced humanoid robot.
Joining later at a panel discussion at DigiSights 2016, Nihal’s father informed the audience that the campaign has helped him realize they are not the only ones who are fighting the disease. “Today we are guiding others who are facing the same problem. Team Nihal has also helped change perceptions in the society. From being looked upon as a curse today people are concerned and take interest in Nihal. He is a celebrity and all thanks to Team Nihal.” The campaign is undoubtedly a great success on digital; also it got a big boost when recently the Delhi government announced to form a committee to develop a policy for tackling rare genetic diseases like Progeria.
#Finding60inIndia is in its next phase where it is finding more Nihal’s in the society and making life better for them.