Atal

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]

[1] https://undiagnosed.hms.harvard.edu/apply/

[2] https://www.researchtothepeople.org/

[3] https://www.goodreads.com/en/book/show/53317420-the-genome-o...

In general they've said that launching used rockets will cost customers about 30 percent less than regular price (so ~43 million instead of 62). For this specific case I wouldn't be surprised if they charged SES less than that because of the risk involved in being the first flight.

Not sure if you're at liberty to say, but if you are I'm interested in what he had to say about the emails.