100 People Search update

Last week we added another person to the HPS patient database - that makes 45 HPS'ers left to find on the 100 People Search.

The story behind this latest member is a great illustration of how educating your friends and family about the HPS type of albinism can actually help identify new families.

A friend of Carmen's came to the HPS Conference in Puerto Rico. He wanted to see Carmen. In the process he got quite an education about HPS.

The other day he was eating dinner in a Chili's restaurant when he spotted a family that had a little boy with albinism. He went over to introduce himself very bravely. It turns out the little boy has an uncle that had albinism and passed away of lung disease - and it turns out the little boy has HPS.

We would have never known about him or been able to give his family support and information if Carmen's friend hadn't been so daring, and so well informed.

Never underestimate the power of networking!

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Ratner's Cheesecake

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Some good news about Pirfenidone

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Living on the frontlines

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