Not directly an answer to your question, but if you're not already aware of it, another thing that might be worth pursuing in parallel is having your doctor refer you to the Undiagnosed Disease Network, if the case meets the criteria for that [1].
Another avenue might be a crowdsourced rare disease research organization like [2]
I have no relation to any of the above but read a book about the UDN that may be of interest to you: [3]
Another avenue might be a crowdsourced rare disease research organization like [2]
I have no relation to any of the above but read a book about the UDN that may be of interest to you: [3]
[1] https://undiagnosed.hms.harvard.edu/apply/
[2] https://www.researchtothepeople.org/
[3] https://www.goodreads.com/en/book/show/53317420-the-genome-o...