The Power of Global Collaboration to Find a Needle in the Haystack

Title: The Power of Global Collaboration to Find a Needle in the Haystack

Learning objectives: Evaluate awareness strategies and methods to identify "hard to reach" populations in a global setting Target audience: Health communications professionals who plan and execute awareness campaigns

Background: Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. All children with Progeria die of the same heart disease that affects millions of normal aging adults (arteriosclerosis), but instead of occurring at 60 or 70 years of age, these children may suffer strokes and heart attacks even before age 10, and the average age of death is 13 years. Remarkably, the intellect of children with Progeria is unaffected, and despite startling physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life. The Progeria Research Foundation (PRF) is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria.

Program background: As of October 2009, 54 children in 30 countries living with Progeria were identified. Based on statistical prevalence, experts believe another 150 children exist worldwide with Progeria who have not yet been diagnosed or identified. GlobalHealthPR, a partnership of international health care communicators, approached PRF about launching a global awareness campaign. Titled "Find the Other 150," the campaign promotes Progeria awareness globally to identify these children.

Evaluation Methods and Results: PRF collaborated with 11 GlobalHealthPR partners to raise awareness of Progeria among both the general public and international medical communities. www.findtheother150.org was developed to serve as an international resource, with images of children with Progeria and information about the disease. Informational materials were translated into several languages and distributed to media outlets worldwide. The campaign requested that anyone who knows or treats a child with Progeria-like characteristics visit the "Find the Other 150" Web site to contact PRF. Within just six months of launching the campaign, PRF received more than 20 inquiries regarding potential children with Progeria. Based on evidence, nine new children with Progeria from seven different countries were identified, including several from developing countries, bringing the total to 63 worldwide (a 17% increase).  

Conclusions: Prior to the launch of the campaign, PRF's Medical Director said that finding even one child would make the campaign a success. The campaign’s results to date are a true testament to the power of global collaboration with culturally-knowledgeable, effective local communications. This ongoing campaign offers the potential to identify many more children with Progeria, allowing them to receive the care they need and helping to advance clinical science for Progeria.

Implications for research and/or practice: The results of this campaign – which has successfully identified children with a disease affecting less than .01% of the global population – demonstrates that this model could be successfully applied to other initiatives focused on more prevalent diseases throughout the world.