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This paper presents a novel framework for creating a recoverable rare disease patient identity system using blockchain and smart contracts, decentralized identifiers (DIDs), and the InterPlanetary File System (IPFS). Smart contracts are executable code that can be written into decentralized storage such as blockchains in order to enable tamper-proof transactions of data. DIDs provide a secure, decentralized, and extensible way to create, store, and manage digital identities, while IPFS provides a distributed, immutable, and secure storage system for patient identities. Utilizing these technologies with smart contracts, we created a framework to store persistent medical records of patients. Smart contracts additionally allow account recovery without the use of any centralized authority. The framework enables healthcare providers to securely access a patient's data while maintaining the patient's ownership of their data. The paper explores the advantages of using a decentralized identity system and highlights the potential of this approach to improve the security and universality of medical records for patients with rare diseases.