The HPS Network, a non-profit patient organization serving families affected by Hermansky-Pudlak Syndrome (HPS) added 48 new people with HPS to its registry between March 2017 and March 2018 as part of its Hundred People Search (H.P.S.) campaign. The HPS Network often assists families and their physicians access diagnostic testing, and provides education and other support services after diagnosis.
“We never want anyone to test positive for HPS,” says Heather Kirkwood, Director of Communications, “But if someone has HPS, we want them to get an accurate diagnosis and information they need to stay as healthy as possible. It can literally be a life and death matter.” The Hundred People Search campaign is a yearly effort to encourage members and friends of the HPS community to outreach in their communities to identify others who might need testing or access to other services.
HPS is a rare disorder, thus identifying 100 new patients in a year is usually not likely. Even so, statistically, there are still hundreds in the United States alone who are either not diagnosed, or are not benefiting from being part of the HPS Network patient registry.
“A lot of work is being done to identify better treatments and one day, a cure for HPS. As progress is made, we want to be able to find the people with HPS that would benefit. What good is working for a cure if you then can’t find the people who need it?” says Kirkwood.
If you have HPS, and would like to be included in the HPS Network’s patient registry, or you’d simply like more information about HPS, call: (516) 922-4022.