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Introducon Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal ge- nec condion characterized by an appearance of accelerated aging in children. All children with Progeria die of the same heart disease that aects millions of normal aging adults (ar- teriosclerosis), but instead of occurring at 60 or 70 years of age, these children may suer strokes and heart a acks even before age 10, and the average age of death is 13 years. The Progeria Research Foundaon (PRF) is the only non-prot organizaon solely dedicated to nding treatments and the cure for Proge- ria. As of October 2009, only 54 children in 30 countries living with Progeria had been idened, but experts believe that there are another 150 children worldwide with Progeria who have not yet been diagnosed or idened. The Power of Global Collabora on to Find a Needle in the Haystack Objecve GlobalHealthPR, a partnership of interna on- al health care communica ons specialists, ap- proached PRF to: Launch a global awareness campaign to drive the search for unidened children with Progeria worldwide. Idenfy addional children with Progeria in order to provide them the unique medi- cal services and care they need, and to further medical research to develop treat- ments and a cure. Since all children with Progeria die from the same heart disease that aects mil- lions of older people, nding a cure for Progeria may give us clues to the heart disease that aects millions of people, as well as other condions associated with the natural aging process. Methods GlobalHealthPR and PRF launched, “Find the Other 150.” The campaign website, www. ndtheother150.org , was developed to serve as an internaonal resource, with im- ages of children with Progeria and informa- on about the disease. Informa onal materi- als 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 characteris cs visit the “Find the Other 150” website to con- tact PRF. Results/Conclusions Within just 6 months of launching the campaign, PRF received more than 20 inquiries regarding potenal children with Progeria from countries around the world. 13 new children with Progeria from 7 dierent countries have been idened, including several from developing countries, bringing the total number to 67 children worldwide (a 24 percent increase). The results of this campaign—which have successfully idened children with a disease aecng less than .01% of the global popula on—demonstrate that this model could be successfully ap- plied to other iniaves focused on more prevalent diseases throughout the world. Stretching across language and geograph- ic barriers, the campaign’s results to date are a true testament to the power of glob- al collabora on with culturally-knowl- edgeable local communicators. Prior to the launch of the campaign, PRF’s Medical Director said that nding even one child would make the campaign a success. »»»» Photo Credit: David Gard/NJ Local News Service 6.7 billion people? 150 children among How do you nd

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Page 1: Global Collabora on - Progeria Research

Introducti onProgeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal ge-neti c conditi on characterized by an appearance of accelerated aging in children. All children with Progeria die of the same heart disease that aff ects millions of normal aging adults (ar-teriosclerosis), but instead of occurring at 60 or 70 years of age, these children may suff er strokes and heart att acks even before age 10, and the average age of death is 13 years.

The Progeria Research Foundati on (PRF) is the only non-profi t organizati on solely dedicated to fi nding treatments and the cure for Proge-ria. As of October 2009, only 54 children in 30 countries living with Progeria had been identi fi ed, but experts believe that there are another 150 children worldwide with Progeria who have not yet been diagnosed or identi fi ed.

The Power ofGlobal Collaborati onto Find a Needle in the Haystack

Objecti veGlobalHealthPR, a partnership of internati on-al health care communicati ons specialists, ap-proached PRF to:• Launch a global awareness campaign to

drive the search for unidenti fi ed children with Progeria worldwide.

• Identi fy additi onal children with Progeria in order to provide them the unique medi-cal services and care they need, and to further medical research to develop treat-ments and a cure.

• Since all children with Progeria die from the same heart disease that aff ects mil-lions of older people, fi nding a cure for Progeria may give us clues to the heart disease that aff ects millions of people, as well as other conditi ons associated with the natural aging process.

MethodsGlobalHealthPR and PRF launched, “Find the Other 150.” The campaign website, www.fi ndtheother150.org, was developed to serve as an internati onal resource, with im-ages of children with Progeria and informa-ti on about the disease. Informati onal materi-als 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 characteristi cs visit the “Find the Other 150” website to con-tact PRF.

Results/Conclusions• Within just 6 months of launching

the campaign, PRF received more than 20 inquiries regarding potenti al children with Progeria from countries around the world.

• 13 new children with Progeria from 7 diff erent countries have been identi fi ed, including several from developing countries, bringing the total number to 67 children worldwide (a 24 percent increase).

• The results of this campaign—which have

successfully identi fi ed children with a disease aff ecti ng less than .01% of the global populati on—demonstrate that this model could be successfully ap-plied to other initi ati ves focused on more prevalent diseases throughout the world.

• Stretching across language and geograph-ic barriers, the campaign’s results to date are a true testament to the power of glob-al collaborati on with culturally-knowl-edgeable local communicators.

Prior to the launch of the campaign, PRF’s Medical Director said that fi nding even one child would make the campaign a success.

»»»»

Photo Credit: David Gard/NJ Local News Service

6.7 billionpeople?

150 children amongHow do you fi nd