For patients, caregivers and authorized providers, the Global Genes RARE Concierge service is for patients who are either seeking to find an accurate diagnosis of a rare disease or who have additional questions about their rare disease diagnosis can obtain immediate and personalized support from our network of healthcare providers, researchers and as leading patient advocates and foundations. The service is free for anyone seeking information and resources on their rare disease.
Based on your submitted request, RARE Concierge will suggest a customized list of available resources, advocacy groups and information from the types of information that Global Genes has curated general information, as well as disease-specific information, from the rare disease community and their partner network. We will provide the most relevant disease-specific information, support services and resources first followed by more general and topical information on rare diseases and access to care.
If you require direct access to a genetic counselor, social worker, and/or clinician, then, upon the patient’s consent, your request will be provided to our trusted network of participating partners. Patient information will never be shared until we receive direct consent from the patient and/or legally-designated guardian of the patient.