[skosuri]

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.

[halukakin]

Thank you! Thanks to Ethan and Julia's weekly meetings on clubhouse, I've heard about some of these. Alok's DAO-based funding system seems very promising. I hope that gets traction. I thought I knew more about RareBase, but now I think I'll need to study their site in more depth.

[aloktayi]

hey halukakin. so very sorry to hear about your kid.

our family experienced something similar when a loved one fell ill and therapeutic options were unavailable. feel free to ping me at [e-mail] - happy to connect and see how we can help.

our vision is to realize every cure for every community. rare diseases is where we are starting.

and thanks Sri for the shout-out!

[rronalddas]

Hi on a side note, I am curious about how did you get to know that your company was mentioned in this thread? Did the OP reach out to you first? Or did you find this comment while reading HN?

[aloktayi]

for me, I was just perusing the replies and saw that Sri had mentioned us.

[halukakin]

Will certainly do. Thank you Alok!

[michaelhoffman]

Ethan Perlstein uses ethnic stereotypes to market his company. He opportunistically uses rare disease kids to shield against complaints. I would steer clear.

[halukakin]

I met with Ethan once to discuss potential drug repurposing avenues. Obviously, I understand he is doing this for profit and I hope his company becomes a unicorn one day. His weekly clubhouse meetings are on par with phd level courses, they feel like information coming out of a firehose. His contribution to the community is incredible.