As of now, 2860 drugs have entered the national medical insurance catalog, and 67% of the drugs for the marketed rare disease are included in it, greatly reducing the burden on patients.
10 years, the number of medical insurance participants in my country has increased from 540 million to 1.36 billion . At the same time, my country has built the largest basic medical insurance network in the world.
For a higher quality and more reliable national medical security system, the country has been working hard!
How much do you know about rare diseases?
Studies have shown that more than 180% of the rare diseases in html are caused by genetic factors, and more than 50% of the rare diseases will occur at birth and in childhood.
Simply put, if both husband and wife have the same defect gene, the next generation is likely to suffer from the disease , and the occurrence of this disease was inevitable as early as the moment the sperm and eggs were bound.
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Therefore, fundamentally prevents and reduces the occurrence of rare diseases. It is necessary to start with pre-pregnancy and prenatal examinations. The doctor and patients work together to reduce the incidence of birth defects in newborns, including rare diseases.
Rare diseases are one of the biggest challenges facing human medicine, and the symptoms of these diseases are also quite rare.
For example: werewolf disease - excessive body hair, dull skin color, hairy marks on the face;
Premature aging disease - looks like an elderly person, and the aging rate is 5 to -10 times that of ordinary people;
Vampire disease - scientific name porphyria , skin exposed to sunlight will feel pain and blisters;
Sleeping beauty syndrome - scientific name Klein-Levin syndrome, manifested as lethargy , patients will sleep for weeks or even months, etc.
How difficult is it to treat rare diseases?
Only less than 10% of rare diseases in the world have approved treatment drugs or regimens.
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Rare disease treatment drugs are generally at a high price, and the annual treatment cost of requires an average of hundreds of thousands of yuan .
Can rare diseases be prevented?
Medical literature says that each person has 5-10 defect genes. Once both husband and wife have the same defect gene, it is possible to give birth to a baby with rare diseases .
Therefore, keeps the prevention and early detection and early intervention are the best ways to prevent and treat rare diseases .
tertiary prevention strategy for premarital and pre-pregnancy screening, prenatal screening and prenatal diagnosis, and neonatal screening can effectively prevent the occurrence of rare diseases.
Rare diseases are not rare,
But patients with rare diseases are most likely to be ignored.
forwarded for love,
Follow patients with rare diseases,
Don’t let them be alone!
