Hyaline Fibromatosis Syndrome, or HFS, is caused by a change in a single gene called ANTXR2.

That gene has one job the body relies on. When it doesn’t work properly, a clear substance called hyaline collects in the connective tissue throughout the body instead of being cleared away. Over time it keeps building.

Between every cell in the body there's a kind of natural packing material that holds everything in place. In Hyaline Fibromatosis Syndrome, the body produces far too much of one part of that material, called hyaline, and can't break it back down. Over time it builds up: causing nodules under the skin, swelling the gums, stiffening the joints, and collecting in the organs, including the gut. Because this packing material exists everywhere in the body, the condition can affect almost any part of it.

Fewer than a hundred cases of HFS have ever been described in the medical literature.

That is precisely why no treatment exists. There has never been a commercial reason for a pharmaceutical company to develop one. The condition is too rare to be worth their while.

So children like Valentina fall through
every gap.

That’s what Valentina’s Village exists
to change.

Fewer than a hundred cases of HFS have ever been described in the medical literature.

That is precisely why no treatment exists. There has never been a commercial reason for a pharmaceutical company to develop one. The condition is too rare to be worth their while.

So children like Valentina fall through every gap.

That’s what Valentina’s Village exists to change.