An organization that is researching Jacobs Syndrome is the NIH. A summary of what they are doing would include simple research and study of the disease itself. Since there is no cure or way to fix the disorder all they can do is try to explain what it is and get the word out. Jacobs syndrome affects boys all around the world but since it is in the chromosomes it cannot be fixed all we can do is research and try to help the symptoms it causes.