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A new feature of the HPS Network Conference

I’m really excited about something new we are doing at this year’s 21st Annual HPS Network Conference. For a decade now, while we were off having our Saturday afternoon sessions, some of our key researchers and doctors scheduled to speak on Science Sunday got together informally. They had lunch, maybe a glass of wine and a snack, and talked about their work together. It was a great chance for them to form relationships in person and form collaborations. 

This year, however, we’re stepping up the game. What was an informal meeting will now be a formal, invitation-only science meeting for HPS researchers and physicians. The formalized agenda will involve presentations about how we can use stem cells taken from the blood samples of those with HPS to grow HPS lung tissue.

It’s important to understand that this isn’t a discussion about how to grow us new lungs in a dish. It is also not a meeting that will be attended by patients. We need to let our researchers talk among themselves in such tones of deep science that we’d all be lost anyway. Grin!

One of the challenges for researchers has been the difficulty in obtaining HPS lung tissue for study and experiments. Because of our bleeding disorder, researchers have been concerned about the risks associated with lung biopsy. While a few HPSers have undergone lung biopsy (with platelets) because of other concerns about their lung health (like cancer for example) researchers have felt the potential risk of harm was just too great.

We’ve tried growing lung tissue from cells of recently explanted lungs. The trouble is, even with the most willing of patients, we’ve run into trouble with pathology departments getting the samples prepared as they are needed for our research.

Thus, being able to grow HPS lung tissue, with all of its cellular flaws, would be a great help to our research.

We have invited a number of doctors the HPS community already knows, as well as some who do not know us very well at all, but are experts in the techniques necessary to accomplish this goal.

I can’t help but be excited about the potential for this meeting, even though we, as patients, might not see the fruits of the meeting for a while on Science Sunday.

Advancing research forward always feels good and creates reason for hope.
I’ll be sharing more about the doctors who have agreed to attend over the coming weeks. Stay tuned for more information!


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