In the United States, an estimated 1 in 10 people suffer from one of over 7,000 known rare disease. Because of low public exposure and lack of interaction between patients, doctors, and scientists, many opportunities for scientific and medical advancement in the rare disease field go unnoticed. Due to limited federal funding and lack of interest from pharmaceutical companies, even the most basic scientific and medical questions regarding these diseases go uninvestigated. Further, rare disease patients, patients’ families, and often physicians do not have easy access to information regarding the most up to date research and medical treatments.
Our mission at the Center To Cure™ is to connect rare disease patients, clinicians, and researchers, facilitating an open exchange of knowledge, experiences, and ideas through the use of webinars, discussion forums, and retreats. To gauge rare disease community needs, the CTC conducts surveys within rare disease populations and organizations to identify and close gaps in rare disease research, treatment, and support. The CTC identifies research projects relevant to specific rare diseases, often spanning multiple diseases, and provides additional funding and scientific support, encouraging the development of research projects in labs with peripheral interests.