Audience
- Parent
Like many Rare Diseases, there is insufficient medical information about JdVS. Some of the JdVS Foundation’s Medical Advisory Board members are a part of the Genida Collaborative Project and families participating are improving our knowledge of various conditions based on their day-to-day experiences. This collaborative research program offers new perspectives and the higher number of families participating the more we will be able to gain new information of medical interest and value. Check out their site to learn more about what they are making happen!
