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

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

#201

Post by WalterBright »

newswasboring wrote: post #166
logifail wrote: post #165

Earlier quoted context omitted.

> We just don't have a good system for funding cures you can't sell to millions (Full disclosure: close family member works at $bigPharma) I don't think it's about finding treatments you can "sell to millions", it's that in pharma, like in pretty much every other business, it's about ROI. You definitely don't need millions of patients, but you do need to cover the R&D costs _and_ have enough left over to keep the sha…

This is such a fucked up incentive structure. Literally having the capacity to save lives but not doing it because otherwise people will pull out their money because Roblox is has a better ROI.

> This is such a fucked up incentive structure.

It has produced far, far better results than communist incentive structures.

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

#202

Post by WalterBright »

mschuster91 wrote: post #172
logifail wrote: post #170

Earlier quoted context omitted.

> This is such a fucked up incentive structure [..] It may well be(!), so let's assume you're right, what better incentive structure should we put in place instead? Increase general taxation and use that to fund more pharamaceutical R&D?

Break up the pharma companies and let them only be at-cost (!) manufacturers, move all R&D off to universities, and cooperate with other countries in said R&D efforts.

That'll mean no more drug development.

My grandmother had rheumatoid arthritis, and it made her life utterly miserable for her last 10 years. Recently, Enbrel was developed by a biotech for profit company, it is the first effective treatment for rheumatoid arthritis.

No university or government came up with it. A for profit company did.

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

#203

Post by mhaughton »

I am so sorry to hear this. Your story resonates.

I am the founder of kernls.com, a giving-platform that connects motivated donors and medical researchers looking for funding. We work with some of the top medical research institutes in the world, and connect people like yourselves directly with researchers to support awareness and fundraising.

Check out the site, and if interested I would be really happy to chat, shoot me an email at mike@kernls.com.

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

#204

Post by klankbrouwerij »

tupilaq wrote: post #191
klankbrouwerij wrote: post #169

My oldest son (4y) has also a rare genetic disorder (18q12.3q21.1 deletion). Part of the chromosome that is missing is the SETBP1 gene [1] and this deletion can result in developmental delay, reduced speech and motor skills, intellectual disability and other issues such as autism. My son’s speech for example is limited to simple consonant-vowel syllables. Dr. Angela Morgan, who is mentioned on the IDefine website, is…

Hey klankbrouwerij.. Just chiming in as my son too has an 18q deletion, albeit further towards the distal arm. Just to bring to your attention, if you were not already aware, of https://www.chromosome18eur.org and its parent organisation https://www.chromosome18.org . Some great resources and there'll be folks who have experienced similar issues to you and yours.

Thanks for sharing, looks interesting!

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

#205

Post by iamcreasy »

ricardolopes wrote: post #193
iamcreasy wrote: post #47

Earlier quoted context omitted.

That's nice! Do you happen to know any US based company that are working on similar objective?

Its competitors DNAnexus and Seven Bridges seem to be US based, or at least report having offices there. But Lifebit is recruiting internationally, and even has a US office now too, so AFAIK it should also be a valid option for US folks.

Thanks for the info. Only marketing position is for Lifebit US.

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

#207

Post by halukakin »

mhaughton wrote: post #203

I am so sorry to hear this. Your story resonates. I am the founder of kernls.com, a giving-platform that connects motivated donors and medical researchers looking for funding. We work with some of the top medical research institutes in the world, and connect people like yourselves directly with researchers to support awareness and fundraising. Check out the site, and if interested I would be really happy to chat, sho…

Hi Mike, Thank you for this. I'll definitely study kernls. I think we should definitely try this through idefine.

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

#209

Post by halukakin »

uthinter wrote: post #198

There was a post some years back on HN. The child had a rare disease and the parents were engineers. Eventually they took up studying medicine and pharmaceutical and started working on the cure them selves. If anyone could link that post I think it will be very helpful. I havent been able to locate that post till now. Maybe those parents can help you out in some way.

Could it be one of these two maybe? https://www.technologyreview.com/2020/03/11/905396/a-family-... https://www.lydianaccelerator.org/

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

#210

Post by zenven »

Very sorry to hear about your daughter but there has never been a better time in the history of medicine to be working on biotech solution to rare diseases. You will have to become an expert yourself in some of the pathways and therapeutic avenues that may help. But you can now fund academic research by directly sponsoring research at an academic or clinical lab, including doing so through Molecule.to (not involved w the company but a fan) that enables research funding from passionate communities. Just keep going one step at a time. Zen
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