In general, in the daily care of patients with rare diseases, the likelihood of a single doctor having enough personal experience in several of these is extremely low, given that it is unlikely that patients visit the same medical center. At times the lack of readily available published information and the lack of a forum for consulting with other experienced physicians about clinical situations have a direct impact on the care the patient may receive. The fact is that doctors and families find themselves alone in the face of this group of diseases which for the most part remain a great unknown for medical science.
We believe that the best way to move forward in our knowledge in this area is by means of the network. The technologies that make up the so-called social network, in this case via the Rare Commons platform, allow clinicians throughout the world to share their questions, their doubts, and their hypotheses with each other. But above all, it permits them to contribute information about their patients, and thereby contribute to increased understanding of the natural course of the disease, the correlations of genotype/phenotype, and other crucial elements.
Discover the benefits and obligations in participating in Rare Commons, as well as the research methodology of participation in the relevant sections.