The information on the GARD website is collected and curated from many research databases. This data is commonly obtained from medical literature that reports on people with the disease and research involving the disease. However, there may be too few people with a specific rare disease that seek medical care or receive a diagnosis. In such cases, little information may be known about the disease, and sections on the GARD website may be missing or incomplete.
When there is limited information available, GARD can still help you. When people contact us with complex health concerns, we often first suggest they consider contacting doctors at a larger university or academic health center. These centers tend to have the latest technology and treatments. Healthcare providers at universities and academic health centers often work together with others to diagnose and treat patients; they may also have doctors who are involved in clinical trials.
It is common for a person affected with a rare disease or a complex health condition to search worldwide for available treatments and research. Advice on the treatment or care of a patient should be obtained through consultation with a physician who has examined that patient and is familiar with that patient's medical history. Though GARD cannot offer medical advice and is not directly involved in patient care or research, we aim to connect you with helpful resources. Please
contact GARD for additional assistance.