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You might be eligible for some of the grants made by CZI for their rare as one program focused on supporting patient driven research for rare diseases. https://chanzuckerberg.com/science/programs-resources/rare-a...
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.
About twenty years later, he was grown up and was soon to have a family, when the son of a family friend was diagnosed in infancy with the same form of cancer - except it was even more rare. This strain is almost always manifested below the neck (like my uncle), but in this child, it was in his brain. It has been a battle, but the boy was able to fight through it several times. Multiple resurgences later, he is finally recovered: thanks to the research done on my uncle.
All that to say, research on rare diseases is extremely important and something I am very passionate about.
NIH provides funding and accelerator programs for medical startups. If you have the expertise, apply yourself, or find a grant writer to help you fill it out all out. The programs themselves are great and they provide a ton of support. Funding is in steps (e.g. step 1 - $200k, step 2 - $1mil).
I'd also recommend https://wefunder.com/ of who I know many of the folks running it and it is great, but the NIH route is more specific to your case.
I feel your pain about wanting more R&D around treatments and potential cures but finding almost nothing because it wouldn't be commercially viable.
My main strategy was trying to contribute with what I know best: software development. The company I joined (lifebit.ai) is building tooling to reduce medical/pharma R&D costs, in an effort to make it economically viable to research diseases that weren't viable before. This is a mission I can get behind and that feels like the best use of my time.
I hope you get to find the best way to have the biggest impact. Good luck!
Hello! > How to raise funds for rare disease research? I'm not a marketing expert (though I do work with rare diseases). But a good starting point might be to checkout https://www.rarebeacon.org/ There certainly is help and there are options, but as you understand finding and accessing them isn't always easy. Good luck on your journey
You might be eligible for some of the grants made by CZI for their rare as one program focused on supporting patient driven research for rare diseases. https://chanzuckerberg.com/science/programs-resources/rare-a...
We couldn't get in last year's batch. I'm thinking we will re-apply this year. If any CZI team members read this at some point. Any pointers for the future would be a great help.
Universities have something called an indirect rate. This is basically how they pay for things that a private company would build into the overall cost of the project. Things like administrative folks, and lights, and heat, and IT support for the internet, etc., because "direct costs" are only what applies directly to your project.
These are often 50%+, and tend to come as a shock to people, even when the total cost is well less than private research firms.
The thing that doesn't get talked about as much is if you're a funder, if you have somewhere on your site, the funding announcement, etc. that you're capping indirects at say, 15%, that it's much easier for researchers to convince university administration to use that lower rate (in that if you don't have it, we're SOL).
So if you do ever manage to head that direction, please do make sure to include something like that.
Hi, your efforts to better understand your daughter's diagnosis are remarkable, and appreciated. A rare disease lights a fire that's almost impossible to extinguish, you want every question answered, there often are none, but it doesn't stop you from searching anyway. Your situation resonates with me a lot, my little girl was diagnosed with another KS - Kabuki syndrome, specifically a mutation with the KMT2D gene (th…
The other kind is about drugs that are out of patent, like Ketamine, which very likely can cure important diseases, but since no one stands to make back the money it costs to get them approved, they remain illegal.
Of course, I'm not at all a billionaire, but some of them read HN.