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Rare disease sufferers


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Do you have a rare disease?  Or a family member?

If not, do you think you can fairly judge the need?

Research into rare diseases may help find answers for more common ones.

Edited by Calm
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10 hours ago, SamuelTheLamanite said:

Does it make sense for pharmaceutical companies to invest in drugs that only help a small number of patients? 

No, and that is why government subsidizes such development.   Sometimes when they do, new research produces new information that is useful more broadly.

But it does make personal humanity sense to work on orphan drugs, even when it makes no economical sense.

ETA:  It is also a consequence of mortals believing that preserving life beyond its natural life by medicine of all kinds is desireable, when death is merely another part of life and one that happens sometimes when a person has done whatever s/he needs to do in mortal life.

Edited by rpn
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Yes, it does.  Medicines and procedures that help rare and/or orphan (that get little to no government funding) conditions often end up having applications far beyond the original target audience.  My children have Fanconi Anemia.  The same research and medicines that help them also gives broader insight on cancer, Type II diabetes, aging, and cell repair.

 

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1 hour ago, rpn said:

No, and that is why government subsidizes such development.   Sometimes when they do, new research produces new information that is useful more broadly.

But it does make personal humanity sense to work on orphan drugs, even when it makes no economical sense.

ETA:  It is also a consequence of mortals believing that preserving life beyond its natural life by medicine of all kinds is desireable, when death is merely another part of life and one that happens sometimes when a person has done whatever s/he needs to do in mortal life.

I am more interested in medicine’s ability to improve the quality of life over extending the quantity most of the time.

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