[sleight42]

There's little money to be made with HD. It's a 1 in 30,000 disease. There's been little reason for anyone other than state sponsors to support its treatment. Add this to the reason's to be disgusted by capitalism. Spoken as a widower of an HD wife.

[mnw21cam]

I do research into neonatal diabetes, which is a 1 in 100,000 genetic disease. We're entirely state and charity funded. We have had a grant for many years to do genetic analysis on anyone from around the world who fits the criteria (diabetes under six months age) and who can send in a blood or DNA sample. It's a good model, and now more than 90% of patients with neonatal diabetes get their genetic diagnosis.

[sleight42]

I am VERY glad to hear this. And thank you for your work.

[missedthecue]

I'm sorry to hear about the passing of your wife.

How common a disease is doesn't have much to do with treatment efforts. Cystic Fibrosis has practically been cured by Big Pharma and only ~40,000 people in the entire US have it.

[pkaye]

That is because the Cystic Fibrosis foundation funded some of the research and drug development to make the first treatment possible. They had to essentially operate in a VC model to get the treatments that these CF patients need.

https://www.cff.org/about-us/our-venture-philanthropy-model

[missedthecue]

Most disease categories have advocacy and funding groups, with varying amounts of success. The point is that rare diseases get new treatments all the time from private for-profit firms. In fact, orphan diseases are extremely profitable, and the FDA offers fast tracked approval decisions, making them an enticing niche to focus on.

[tirant]

I'm sorry for your loss, I can only imagine how difficult it must feel to face a disease with so few treatment options

I just would like to say that it's not capitalism that decides if money is invested in a disease or another but just the individuals operating freely in the market. On the other hand Capitalism has been actually the main driver for the massive investments that enable the expensive research in biomedical topics.

It’s unfortunately normal that conditions with very low prevalence, receive less private investment than diseases that affect millions of people. That’s not because of a moral failing of capitalism, but a result of free market and the free decision of the population on where to allocate their resources. Imposing anything else on people would actually be the real moral failing, because what is the right allocation of resources between technological development, investments about hunger, medical development or just leisure? Let each individual decide for themselves and of course feel free to convince anyone to invest in what you consider priority.

So I think the fairest system is the one where individuals remain free to choose how to invest their time and money, while society as a whole can still decide, for example through philanthropy, to give extra support to areas some areas like rare diseases.

Said that, if you know of any organization supporting HD research that deserves any type of donation please let us know here so we can support it voluntarily.

[kulahan]

It really has nothing to do with capitalism. There are special grants in the US for researching rare diseases, specifically to ensure money isn't the barrier.

As an aside because I'm pedantic about the language, apostrophes are never used to show pluralism.

[kens]

> As an aside because I'm pedantic about the language, apostrophes are never used to show pluralism.

Mind your p's and q's.

Source: Chicago Manual of Style, 14th edition, section 6.82. Also see section 6.77: Tim had had enough of her "maybe's."

[kulahan]

I am unironically stunned

[karmelapple]

I am scared that special grants to research rare diseases will go away, too.

If we're trying to figure out what the most benefit for each taxpayer dollar is, then a rare disease won't win out over, say, cancer research.

Someone may consider researching a rare disease as "waste," even though to everyone including the previous poster who is a widow because of HD, it is far from a waste.

When there is not much of a profit motive to do something - whether going to the moon or fighting a rare disease - public money is the best way to do it. And even throwing a fairly small percentage at it can create big achievements.

And that's one reason I'd like to see how much money and time went into this. We might be surprised that it's fairly small in the grand scheme of biomedical research costs!

[jjtheblunt]

> apostrophes are never used to show pluralism.

in Dutch they are for some words, e.g., 1 ski, 2 ski's. i have no idea how that arose historically.

[kulahan]

The Nords are a pox upon us all. TIL though, thanks - I probably should've been clear I only meant in English :)

[J_McQuade]

If you think the Dutch are Nords, then I would ask you to learn more English.