Number of Children Identified Continues to Soar

Number of Children Identified Continues to Soar

Thanks to PRF's "Find the Other 150" initiative, the global campaign to find all children with Progeria has helped attain an astonishing 48% increase in those identified. Now more children than ever can get the support they need.  

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♦ PRF has brought awareness to new heights and areas of the world, resulting in an astonishing increase from 54 to 80 children – a 48% increase in the number of known children living with Progeria.

Eighteen months ago, PRF launched its "Find the Other 150" campaign in partnership with GlobalHealthPR, a worldwide health communications group with offices in the United States, Asia, Western Europe and Latin America. Its goal: search globally for children with the extremely rare disease Progeria, so they can receive the unique the care they need and help advance clinical science for Progeria. Through proactive outreach and a dedicated web site with information in 6 languages (, this campaign is succeeding far beyond our expectations!

The total number of known living children with Progeria is now 80 worldwide, a 48% increase. The children span five continents, and range in age from 5 months to 21 years.

Stretching across language and geographic barriers, the campaign's results to date are a true testament to the power of global collaboration.

"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. " 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 medical research to develop treatments and a cure."

Coverage of the campaign has been extensive in some areas of the world:

√ BRAZIL: An interview with PRF's Executive Director was published in the Brazilian newspaper "O Estado de S.Paulo", one of the biggest and most credible, with outreach to all regions of the country.

√ BRAZIL: More than 20 articles and a TV piece followed after 2 children were found.

√ INDIA: An interview with PRF's Medical Director Dr. Leslie Gordon was published in an Indian newspaper, the NavBharat Times

√ ARGENTINA: Interviews for La Prensa newspaper and Pro-Salud

√ TURKEY: Articles published in a dozen print and on-line outlets

√ MEXICO: Article in a top Mexican outlet, Milenio

√ WORLDWIDE: The National Organization of Rare Diseases and Eurodis featured the campaign on its web site, Twitter and FaceBook pages, as part of Rare Disease Day 2009

√ and reported on the campaign's success, reaching millions more.

There is a direct correlation between media exposure and identification of children, as evidenced by the tremendous success in Brazil, where the number of children soared from 1 to at least 9 as exposure to Progeria reached the entire country.

Let's keep the momentum going! How can you help make this happen?

♦ Encourage your friends, family, business colleagues and everyone in your address book to visit, where information about the disease is included in several languages.

♦ Follow updates from PRF through Facebook and Twitter, and encourage others to use these pages to find out more information.

♦ If you have media contacts in China, Eastern Europe and other countries in which global communication is limited, please contact us.

Thank you ALL for helping us find these special children!

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