Wednesday, March 29, 2017

Hundred People Search

It is that time of year again - the time of year when the Hundred People Search (H.P.S) starts over again. We are kicking off the year with two new members on the HPS patient registry. That means we only have 98 to go by next year's conference! It's a big task, and honestly, we've never hit 100. Perhaps this is the year that can change that.

What is the Hundred People Search? It is an outreach challenge to the community of those impacted by Hermansky-Pudlak Syndrome or HPS. We dream of a year when there is no one to find, but sadly, that just isn't in the cards. Together, as a community, we dream of better treatments, and someday, a cure - but that can't happen unless the HPS community comes together. We have to find one another, all over the world and not just in the United States, to show researchers we are here, we are willing and we need a cure!

We are limited by being rare, and by not having millions to spend. So, it is up to us and our supporters! Many are involved in the albinism community and many others are involved in the Puerto Rican community (most affected by HPS). They are best placed for grass roots outreach to find others with HPS.

It is up to everyone whether they want to be more deeply involved in the community, or just sign up so that they can learn about research, meet others in the same shoes and join in to help us in the journey to find a cure. Everyone copes differently. It is vital for all of us, however, that we find those impacted by HPS around the world so that someday, we can find better treatments, and a cure, for all of us.

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