RARE DISEASES (18)
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World is infested with hypochondriacs...
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GUZMAN1: The Global Genes Project estimates some 300 million people worldwide are affected by a rare disease.
The European Organization for Rare Diseases (EURORDIS) estimates that as many as 5,000 to 7,000 distinct rare diseases exist, and as much as 6% to 8% of the population of the European Union is affected by one.
Only about 400 rare diseases have therapies and about 80% have a genetic component according to Rare Genomics Institute.
Rare diseases can vary in prevalence between populations, so a disease that is rare in some populations may be common in others. This is especially true of genetic diseases and infectious diseases.
Rare diseases usually are genetic, hence chronic.
The European Organization for Rare Diseases (EURORDIS) estimates that as many as 5,000 to 7,000 distinct rare diseases exist, and as much as 6% to 8% of the population of the European Union is affected by one.
Only about 400 rare diseases have therapies and about 80% have a genetic component according to Rare Genomics Institute.
Rare diseases can vary in prevalence between populations, so a disease that is rare in some populations may be common in others. This is especially true of genetic diseases and infectious diseases.
Rare diseases usually are genetic, hence chronic.
Science doesn't quite work like that. They tend the try and study what's most interesting, what will tell them something new, and not necessarily whichever condition is most common and of the greatest need.
Research into certain rare disorders has lead to the treatment of much more common ones, and on the flipside we give a lot to breast and prostate cancer charities - as each gender has taken one of these cancers and made it their thing - but progress is slow because it's an incorrect priority, it's studying in the wrong order.
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LilBeaver: World is infested with hypochondriacs...
Yeah i heard there are rear rare diseases floating around....
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Obstinance_Works: Science doesn't quite work like that. They tend the try and study what's most interesting, what will tell them something new, and not necessarily whichever condition is most common and of the greatest need.
Research into certain rare disorders has lead to the treatment of much more common ones, and on the flipside we give a lot to breast and prostate cancer charities - as each gender has taken one of these cancers and made it their thing - but progress is slow because it's an incorrect priority, it's studying in the wrong order.
Research into certain rare disorders has lead to the treatment of much more common ones, and on the flipside we give a lot to breast and prostate cancer charities - as each gender has taken one of these cancers and made it their thing - but progress is slow because it's an incorrect priority, it's studying in the wrong order.
Perhaps it's the way of distribute the funds they collect.
I just don't know if it's for investigation or to help families in special circumstances during the treatments.
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Stedan: Ah so you have not tried the long needle and hyperdermic syringe using lots of Penecillin ??????? "Yes it does go in the Eye End"
I used to know how to hot wire a car.
Does that count?
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GUZMAN1: The Global Genes Project estimates some 300 million people worldwide are affected by a rare disease.
The European Organization for Rare Diseases (EURORDIS) estimates that as many as 5,000 to 7,000 distinct rare diseases exist, and as much as 6% to 8% of the population of the European Union is affected by one.
Only about 400 rare diseases have therapies and about 80% have a genetic component according to Rare Genomics Institute.
Rare diseases can vary in prevalence between populations, so a disease that is rare in some populations may be common in others. This is especially true of genetic diseases and infectious diseases.
Rare diseases usually are genetic, hence chronic.
The European Organization for Rare Diseases (EURORDIS) estimates that as many as 5,000 to 7,000 distinct rare diseases exist, and as much as 6% to 8% of the population of the European Union is affected by one.
Only about 400 rare diseases have therapies and about 80% have a genetic component according to Rare Genomics Institute.
Rare diseases can vary in prevalence between populations, so a disease that is rare in some populations may be common in others. This is especially true of genetic diseases and infectious diseases.
Rare diseases usually are genetic, hence chronic.
I got curious and look at the most rare diseases (infectious and non-infectious) and among them there was:
Foreign accent syndrome!
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lifeisadream: I got curious and look at the most rare diseases (infectious and non-infectious) and among them there was:
Foreign accent syndrome!
Foreign accent syndrome!
I do believe I do have that disease.
People always ask me:
Where are you from? even in my home town!
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I have a rare blood disorder known as polycythemia ruba vera . Not hereditary, no known cure , and un known cause. That pretty well makes this random. I will watch this poll with interest to see how people vote , but don't take your good health for granted and I voted no matter the cost we are entitled to treatment .
Life goes on and I believe science specifically stem cell research will find a cure . Hers hoping , in the mean time like i said " life goes on" longer for some than others, again random IMHO
Gary
Life goes on and I believe science specifically stem cell research will find a cure . Hers hoping , in the mean time like i said " life goes on" longer for some than others, again random IMHO
Gary
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vfrman: So far all i see are jokes. hmmmmmm
I voted for the right to treatment.
Nobody should be abandoned in their hour of need, even if all that can be provided is palliative care.
Nobody would vote otherwise if they were seeing a loved one suffering, so why should it be different if we don't know someone?
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Question.
How much money are we going to throw into researching cancer? I mean with all the Research Cancer Donation boxes in all the Safeway supermarkets and other markets around the U.S. we must be giving billions on research. And they still don't have a clue. Come on!!
How much money are we going to throw into researching cancer? I mean with all the Research Cancer Donation boxes in all the Safeway supermarkets and other markets around the U.S. we must be giving billions on research. And they still don't have a clue. Come on!!
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Riverskipper: Question.
How much money are we going to throw into researching cancer? I mean with all the Research Cancer Donation boxes in all the Safeway supermarkets and other markets around the U.S. we must be giving billions on research. And they still don't have a clue. Come on!!
How much money are we going to throw into researching cancer? I mean with all the Research Cancer Donation boxes in all the Safeway supermarkets and other markets around the U.S. we must be giving billions on research. And they still don't have a clue. Come on!!
Sad to say: I agree with you.
It is sorta like the charities who pays their top executives a large proportion of the donations in cash or kind. Crappy.
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Riverskipper: Question.
How much money are we going to throw into researching cancer? I mean with all the Research Cancer Donation boxes in all the Safeway supermarkets and other markets around the U.S. we must be giving billions on research. And they still don't have a clue. Come on!!
How much money are we going to throw into researching cancer? I mean with all the Research Cancer Donation boxes in all the Safeway supermarkets and other markets around the U.S. we must be giving billions on research. And they still don't have a clue. Come on!!
Would your answer be different if you were diagnosed with cancer? Just wondering
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I believe that everyone who works should contribute to health insurance. I think health insurance should be run by the state and benefit everybody. I guess that makes me a health-socialist. I even believe that people who I can't stand should be entitled to health care. That view is not at all popular in this country, but hey ho. We still have free speech
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vfrman: I have a rare blood disorder known as polycythemia ruba vera . Not hereditary, no known cure , and un known cause. That pretty well makes this random. I will watch this poll with interest to see how people vote , but don't take your good health for granted and I voted no matter the cost we are entitled to treatment .
Life goes on and I believe science specifically stem cell research will find a cure . Hers hoping , in the mean time like i said " life goes on" longer for some than others, again random IMHO
Gary
Life goes on and I believe science specifically stem cell research will find a cure . Hers hoping , in the mean time like i said " life goes on" longer for some than others, again random IMHO
Gary
As anybody in your situation I guess you'd like that some funds will be destinated to investigation.
I readed that your disease increases with age, and some think there are priorities as number of patients or if affects children.
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Nidifugous: I believe that everyone who works should contribute to health insurance. I think health insurance should be run by the state and benefit everybody. I guess that makes me a health-socialist. I even believe that people who I can't stand should be entitled to health care. That view is not at all popular in this country, but hey ho. We still have free speech
Sure
In my country there is an state system to health care, and I think everybody agree, even when some thinks it would be better that the task would be done in private centers instead of public hospitals.------ This poll is Archived ------
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Stats for this Poll
29 Votes
2,289 Views
18 Comments
Created: Jan 2015
Last Viewed: Apr 13
Last Commented: Jan 2015
Last Voted: Jul 2017
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RARE DISEASES(Vote Below)
The European Organization for Rare Diseases (EURORDIS) estimates that as many as 5,000 to 7,000 distinct rare diseases exist, and as much as 6% to 8% of the population of the European Union is affected by one.
Only about 400 rare diseases have therapies and about 80% have a genetic component according to Rare Genomics Institute.
Rare diseases can vary in prevalence between populations, so a disease that is rare in some populations may be common in others. This is especially true of genetic diseases and infectious diseases.
Rare diseases usually are genetic, hence chronic.