VON HIPPEL LINDAU DISEASE

This study follows patients who are already taking the cancer drug belzutifan in earlier trials. Researchers want to understand the long-term survival benefits and safety of this medication for people with advanced solid tumors or tumors related to Von Hippel-Lindau disease. Only…

This study is testing how well the drug belzutifan works for controlling tumors in people with von Hippel-Lindau (VHL) syndrome, a rare genetic condition that causes tumors in multiple organs. Researchers will follow 100 patients in Brazil to see how effectively the drug shrinks …

This study is testing an oral medication called belzutifan for people with advanced rare tumors, including pheochromocytoma, pancreatic neuroendocrine tumors, VHL disease-associated tumors, and certain gastrointestinal cancers. The main goal is to see how well the drug shrinks tu…

This study aims to collect health information from people with Von Hippel Lindau (vHL) disease, a rare genetic condition. Researchers will track how the disease develops over time, what treatments patients receive, and how it affects their quality of life. The goal is to better u…

This study aims to better understand how pancreatic tumors develop and grow in people with von Hippel-Lindau (VHL) disease, a rare genetic condition. Researchers will follow 740 participants aged 12 and older over many years, using regular scans and tests to track tumor changes. …

This study aims to discover new genes that cause cancer to run in families, especially those affecting children. Researchers will collect health information, blood, and sometimes leftover tumor samples from families where multiple members have had cancer. The goal is to build a l…

This study aims to create a single, large registry to collect information on many different rare diseases. It will enroll about 380 patients already being treated at the Hospital Italiano de Buenos Aires who have one of the listed rare conditions. The goal is to gather data to be…