Rare diseases occur in around 1 in 15 people and include at least 7,000 known human illnesses affecting an estimated 400 million individuals around the world. This hackathon focuses on a rare disease known as X-Linked Dystonia-Parkinsonism (XDP) that uniquely affects people from the Island of Panay in the Philippines. XDP is a hereditary disease that involves a progressive loss of nerve cells in brain regions that control movement, resulting in significant disability and decreased lifespan. There is currently no cure for XDP, and there is an urgent need to develop new therapeutic options.
XDP patients live around the world but are likely found where Filipino communities are largest, including the Philippines (especially in the Visayan or Visayan-speaking regions), the United States (particularly in California, New York, and Hawaii) and in other countries (namely Saudi Arabia, United Arab Emirates, Canada, and Japan). Identifying these individuals and connecting them to centers that provide comprehensive care and support services, as well as opportunities to participate in research, are also important goals.
The Hack for XDP is a call for new ideas that address these critical gaps in our ability to treat and support individuals with XDP. It is brought to you by The Collaborative Center for X-Linked Dystonia-Parkinsonism (CCXDP), a global coalition of scientists, physicians and patient advocates all dedicated to finding a cure for XDP. Since 2014, CCXDP researchers have conducted groundbreaking studies that have pinpointed the genetic cause of XDP, developed new experimental models, and characterized patterns of symptoms in patients. But there is still much we do not know. The Hack for XDP is an invitation to people everywhere to join these efforts to solve this disease.
The Sunshine Care Foundation Inc., 2F
The Health Centrum, Teodorica Avenue, Banica, Roxas City, Philippines
The Sunshine Care Foundation Inc.,
Metro Iloilo and Medical Center, Metropolis Avenue, Iloilo City, Philippines