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Showing posts with the label HPS Network News

Hundred People Search Update!

It has been a while since I've posted an update. Sometimes it takes time for people to work their way through the testing phase etc. We have added four more new HPSers to the registry. This puts us at 90 to go on this year's Hundred People Search (HPS). Outreach is harder during the pandemic. We can't attend conferences or hold conferences and outreach events. It is a worry because there is actually a lot going on in research just now, and soon we will really need all HPS hands on deck to push things forward. We need to get creative! 
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Anyone home?

Where have all the staffers gone? It seems like that should be the line of a song. Grin! I just wanted to post a little about what is going on behind the scenes at the Network. I know those of you who actively follow the HPS Network’s social media etc. or who have needed things from us lately, might have noticed we’ve been less active online and maybe not as quick to respond to non-emergency issues. There are a lot of times things are quite busy in the HPS Network offices, but we can’t always elaborate about everything happening. It isn’t that it’s a huge secret exactly. It’s more the boring nuts and bolts of keeping the ship afloat and the trains running (hopefully at least mostly on time.) There are times we are working on things that just can’t be announced yet for lots of reasons. This is just like any other business. Sometimes things fall through, or developments can’t be announced until all the players are ready. Sometimes we are just so busy working to move the cure forward, we ...
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Hundred People Search Update

We've added a new HPSer to the HPS registry. This puts us at 79 to go this year. We had a number of new people coming in, but it has really fallen off through late July and August. Thanks to everyone who is keeping up the outreach. We don't want to leave anyone behind - especially with all the exciting things happening. 
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A new HPS Year, a new 100 People Search!

Every year after conference we start the Hundred People Search (HPS) all over again. It isn't that we ever want to find anyone with HPS. Frankly, we'd all be happy at the HPS Network if we went out of business! It's our goal and dream.  The truth is, however, that there are people out there with HPS that don't know it. That can be dangerous. It can even be life threatening in an emergency. And, there are people out there with HPS who are diagnosed, but don't know about the HPS Network. Because HPS is so rare, they are not likely to hear about the latest science, or clinical trials etc. from their own physicians. It is also, for many of us, an incredible thing to be able to talk to people who get it - and get it all. Not just the albinism, or the low vision or the bowel disease or the lung issues or the bleeding, but what it is like to cope with some or all of these things together.  I think people really underestimate that. I made friends at my hospital during m...
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