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Searching the world

Raising public awareness of Progeria

Published: 22 Jul 2011

PRF image

PRF provides unique support to children with Progeria.

Client: Progeria Research Foundation (PRF)

Agency: GLOBALHealthPR Spectrum

Campaign: Find the Other 150

Timescale: October 2009 to ongoing

A quick look

As of October 2009, only 54 children living with Progeria had been identified, in 30 countries. Based on the statistical prevalence of disease, experts estimated that another 150 children worldwide with the rare, fatal, rapid-aging disease had not yet been diagnosed or identified. The Progeria Research Foundation (PRF) collaborated with GLOBALHealthPR, a network of more than 200 owner-managed healthcare communications agencies, to raise awareness of Progeria with the hopes of identifying undiagnosed children.

Challenge

The Progeria Research Foundation partnered with global communications experts to launch the 'Find the Other 150' campaign. The goal of the campaign is to find the undiagnosed children with Progeria around the world to provide them with the unique support that PRF can provide.

Solution

In creating and carrying out the 'Find the Other 150' campaign, Spectrum, founder and chair of GlobalHealthPR, collaborated with expert global communicators in 10 countries. GLOBALHealthPR is the largest independent public relations partnership dedicated to health communications worldwide.

To create a universal resource on Progeria and the 'Find the Other 150' campaign, GLOBALHealthPR developed www.findtheother150.org. The site includes a homepage with a map identifying locations around the world of children with Progeria, background on the campaign and the call to action of contacting PRF if there is a child believed to have Progeria. The site also includes a page dedicated to PRF’s educational materials in several languages, podcasts from PRF spokespeople and families of children with Progeria, images and videos of known children with Progeria around the world.

GLOBALHealthPR partners conducted outreach to local media to raise awareness about Progeria and the campaign. The partners reached out to broadcast, print and online media, as well as medical trade publications, to educate the general public and medical professionals about Progeria. The partners directed interested media to the website, which included a 'For Media' section containing relevant educational and visual information. Each partner’s extensive understanding of his regional culture allowed him to approach outreach in a way that resonated appropriately with the media, medical professionals and country’s citizens.

Results

Within just one year of launching the campaign, PRF received more than 40 inquiries regarding potential children with Progeria from countries around the world. Based on the information provided by medical professionals and caregivers, 24 children with typical or atypical Progeria from 12 different countries were identified since October 2009. The identification of nearly half of these children can be directly attributed to campaign efforts. The total number of known living children with Progeria is now 78 worldwide, a 44 percent increase.

Client verdict

"At the launch of the campaign, we said that finding even one child would make the campaign a success," said Audrey Gordon, President and Executive Director, PRF.

"The success of the campaign to date is a testament to the power of global collaboration. We now know that through our continued global efforts, we can find even more children with Progeria to provide them with unique and essential medical services and care, and significantly further research to develop treatments and a cure."

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