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Four new HPS'ers added to the HPS patient registry

It's been a busy week with new families. This week we added four new people to the patient registry at the HPS Network. That means we have 29 to go to meet our Hundred People Search goal for the year. I really think we can make it this year, if not blow our goal right out of the water.

I sometimes worry that strangers might not understand our Hundred People Search. They might think we're actually happy to have people diagnosed, and that might seem grusome to them.

I'm never happy that anyone has HPS. I am happy, however, when they are diagnosed because it means they've got a better shot at a happy and healthy life. It means they know what to do and can take control of their care.

It's hard sometimes because I know that there are others out there living with HPS, but they don't know it yet. Maybe they've been lucky to have great health so far, but if that ever changes, they'll be at a horrible disadvantage for the best outcome.

It's also important, from a global HPS standpoint, that we find everyone. We need to prove to science that we're here, and we're ready for the next step in the journey to the cure. We're ready, and we're willing. We're here to stand up and be counted and find the cure one day. And when we do, we don't want to leave anyone behind.
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