You might be eligible for some of the grants made by CZI for their rare as one program focused on supporting patient driven research for rare diseases.
https://chanzuckerberg.com/science/programs-resources/rare-a...
https://chanzuckerberg.com/science/programs-resources/rare-a...
Meta aimed to build a knowledge graph of published research papers.
Patient driven research/rare is one is a separate program focused on supporting patients with rare diseases connect with and support scientists studying those diseases and the larger rare diseases network.