There are less than 500 children diagnosed with NKH worldwide, and most of them are diagnosed with Classic NKH. Despite Thomas being diagnosed with a Variant form, he still faced many challenges. At the time, Dr.Johan Van Hove was doing NKH research on his own, and his lab was processing most of the DNA samples for NKH. He informed us he needed funds to do basic studies to show that earlier diagnosis, better treatments or even a cure was possible.

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To date, we have raised over 500,000 and as of 2022, three US large universities and one UK large university are conducting NKH research. NKH Crusaders is also committed to supporting families who are newly diagnosed with this disease and we are often the first point of contact after diagnosis. We connect the families with the leading NKH physicians as well as other NKH families in their area and on social media for support.

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In 2022 NKH Crusaders created the first US NKH Patient Registry in October 2022 began enrolling families as we prepare for clinical trials in the near future.