IAMRARE

Providing an internet website portal serving the rare disease community featuring technology that allows users to access product guides for navigating the registry platform, resources for submitting documents to institutional review boards, exchange ideas regarding rare diseases, view portal software enhancement releases, request training and gain access to resources for rare disease healthcare management, and document templates for customization with regard to rare disease name, organization name and registry name, informational brochures to publicize particular registries or use as recruitment materials, study consent forms, and protocols