Wednesday, March 19, 2014

Hundred People Search Summary and Update

The 21st annual HPS Conference is behind us, which means it's time to start the year's Hundred People Search (H.P.S.) over again. For the last year, we added a total of 66 new HPSers to the patient registry. That fell short of our record by five. 

This might not sound like a lot, but for a disease many of us were told we couldn't have because it is so rare, it is. Also, consider that this is more than one family diagnosed a week. Gladly, we help more families than this get tested every week. Many more test negative and can go away happily knowing HPS is something they need not worry about. 

Let me be clear. I would never want anyone to have HPS. It's my hope that we find the cure and none of us have to have it. However, having HPS and not knowing it can be so dangerous! Accurate diagnosis is so important. 

That is why we issue the Hundred People Search challenge every year. It's up to us - the membership of the HPS Network - to be the voice to help others get an accurate diagnosis. 

One step more than that, it is very important that people with HPS around the world be on the Network's patient registry. Not everyone can be seen at NIH. Because NIH is a government institution, they can not be seen to solicit research participation by patients. There are all these rules that govern what they can and cannot do. Thus, it is up to us. 

Being on the registry means that when there are important developments (like say someday a treatment) we can find you and let you know. 

Thus, it is important to not only be on the registry, but to keep those contact details up to date! 

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