Ask HN: How to raise funds for rare disease research?

Re:Ask HN: How to raise funds for rare disease research? by halukakin on Monday February 07, 2022 @06:06PM (#30252753)

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.

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Re:Ask HN: How to raise funds for rare disease research? by aloktayi on Monday February 07, 2022 @11:21PM (#30254870)

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 [email protected] - 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!

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Re:Ask HN: How to raise funds for rare disease research? by rronalddas on Tuesday February 08, 2022 @01:09AM (#30255417)

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?

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Re:Ask HN: How to raise funds for rare disease research? by aloktayi on Tuesday February 08, 2022 @10:04AM (#30259202)

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

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Re:Ask HN: How to raise funds for rare disease research? by halukakin on Tuesday February 08, 2022 @02:22AM (#30255767)

Will certainly do. Thank you Alok!

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Re:Ask HN: How to raise funds for rare disease research? by michaelhoffman on Monday February 07, 2022 @10:41PM (#30254661)

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

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Re:Ask HN: How to raise funds for rare disease research? by halukakin on Tuesday February 08, 2022 @03:06AM (#30255985)

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.

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