I imagine how hard this must be on you and your family and kudos for having the energy and wherewithal to try to organize. I think there are a few people/places that might be worth reaching out to in order to learn more.

1. AllStripes (https://www.allstripes.com/) -> It might be worth reaching out to them to get put in contact with other foundations that might be working on the same thing.

2. Reaching out to RareBase (https://www.rarebase.org/) or Ethan Perlstein (https://mobile.twitter.com/eperlste) to talk about how they work with similar foundations.

3. There is a new company called (https://www.vibebio.com/) that are working on helping fundraise for patient communities using DAOs. I think Alok Tayi is one of the founders there.

4. I know there are some tech founders with family members of rare disease that have gone through similar experiences. For example, I think Rohan Seth at clubhouse has one (https://www.lydianaccelerator.org/). They might be good resources to reach out too.