Rare Orphan Disease

About Rare Orphan Disease

Living with a rare disease often means you know more about it than most doctors you meet, and many people come to DrTalks looking for others who understand. A rare cancer like solitary fibrous tumor, a child's unusual illness no one could explain, reactions to sulfites, and the hunt for research and the right specialists are all things these experts talk about. These talks also go past a single diagnosis. Rare conditions are often tied to genetics, and getting good care means advocacy, research and access. You'll find conversations on living with metastatic solitary fibrous tumor, how tissue and data donation move rare cancer research forward, sulfites and health, and stem cell research. Doctors, researchers and patients explain what's actually going on, which tests are worth asking your provider about, from genetic testing to imaging, and what helps, from finding the right specialists and speaking up for yourself to community support.