More than 1,000 family members of children with rare diseases have jointly asked for help, what dise

Rare diseases are very low in incidence, and there are very few patients with this disease, and it is difficult to get up.

For example, albinism, mitochondrial disease, acromegaly, hemophilia, thalassemia . The probability of getting these diseases is very low, these diseases account for only 10% of human diseases, and the number of people who get them accounts for about 1% of the total population.

Rare diseases refer to diseases that are difficult and rare, and the cost of diseases is very expensive, ordinary families cannot afford medical expenses, and patients with rare diseases are very psychologically and physically painful.

Indeed, we should take care of them, because not only do they suffer from chronic illness, but they also do not have a happy life. Although we have a low probability of developing rare diseases, we may not be able to reach more people with rare diseases. But in fact, there are still many people who suffer from rare diseases who are unable to live easily and are unable to do what they want to do.

Not only are many children with rare diseases unable to live a more relaxed and comfortable life, but they also do not grow up healthy and happy. Because they need to take medication for a long time, a shortage of medicine can hit them catastrophic. More than 1,000 family members of children with rare diseases have jointly asked for help, should we take more care of children with rare diseases?

I think we need to take care of them, and there are three reasons why we think so

I think we should take care of them because they do have to overcome a lot of difficulties, and they need to constantly adjust their condition in order to be able to regain their lives. But the process is particularly cruel, and they also need to endure great torture, which can put them in a desperate situation. Therefore, we should focus on the difficulties and dilemmas they face.

Second, they also need our support and encouragement.

Children with rare diseases may experience psychological shadows and may not be able to communicate normally with the outside world. They may despair of the world, and they may not be able to look forward to the future. Therefore, we need to not only give them more care, but also support and encourage them, so that they can feel warm.

Third, their lives are very difficult.

Many patients are unable to ease the burden on their families and do not have access to more useful medicines. Not only are they unable to raise enough money, but they also don't get other help, which not only makes their lives more difficult, but it also increases their burden, which leads to more mental stress on them, which is one of the reasons why we need to pay attention to them. <>

That's my opinion.

Yes, the Red Cross should be more concerned, and we can do our own thing.

Should. Because children with rare diseases are very painful and lack of solutions, we should take more care of children with rare diseases.

Yes, we should take more care of such children with rare diseases, these children are particularly fragile psychologically, and they are also very insecure in life.

As a parent's biggest concern is the safety of their children, many children suffer from some "serious diseases" and have to rely on drugs for a long time to maintain, once these drugs are lacking, it will indirectly lead to the aggravation of the child's disease and even life-threatening. Therefore, under the premise of laws and regulations, it is advisable to open up green channels to save these families in distress. According to the news ** report, there is such a group of parents who ask the society for help.

1. The child is in urgent need of medicine.

Who still has extra clobazam? ",**Can I buy clobazam, my child is about to run out of medicine, anxious! According to the reporter's understanding, the children of parents in these WeChat groups generally suffer from infantile spasms, Otahara syndrome, tuberous sclerosis and other diseases.

These diseases are all rare diseases and face the risk of drug shortages, and they have organized thousands of parents to sign their real names, hoping that in this way, the whole society will ask for help. According to statistics, more than 1,000 children need to take clobazam, but regrettably, most of them are already at risk of discontinuation.

2. Why is medicine so hard to buy?

Previously, a family member of a child in Henan Province bought clobazam from his son because he was suffering from such diseases, but was taken to the police station on suspicion of drug smuggling and trafficking. As a result, the "drug trafficking" controversy continues to ferment, which can't help but remind us of the very famous movie "I Am Not the God of Medicine", whose plot is very similar. It is said that "life is priceless, life is supreme", so how should we choose in the face of law and life?

This is a thought-provoking topic.

3. What kind of drug is clobazam?

It is understood that clobazam is a broad-spectrum anti-seizure drug for such rare diseases, which has been used as an anti-epileptic drug in more than 100 countries since the 80s of the 20th century. Children with epileptic encephalopathy will have repeated seizures, which can last for a few minutes, tens of minutes or even a day, and if not rescued in time, it is likely to cause death.

I think these people are also desperate, so I thought of such a way, and I also hope that someone can really help them, and they are indeed quite pitiful.

I think this incident makes me feel very distressed, but the good child is suffering from such a serious illness, and these family members are also very helpless.

This is a very thought-provoking matter. We should do our part to help these patients, so that the families of the patients can feel more at ease.

I think the relevant departments should pay attention to the joint request for help from these family members, and find ways to help them solve the problem, because these family members are really not easy.

I feel very sad about this incident, and I want to use my own strength to help the families of these sick children and let them have a normal life.

I think it's become a big deal now, and a lot of the families who are asking for help have joined forces, and they all want help.

Every child is the heart of the parents, and if they are sick, then the parents are also very anxious and worried. Therefore, when the child is sick, the parents will devote all their wealth to help the child. However, some diseases are relatively rare, and the cost is also very large, which is completely beyond the scope of the family's responsibility.

Nowadays, more than 1,000 families of children with rare diseases have jointly asked for help, so what do netizens think about this matter?

Why do the families of these children with rare diseases join forces to ask for help?

It turned out that these children were suffering from some rare diseases, which were very rare, and there were not a few cases in the country. And the cost of these diseases is very high, they are very short of medicines, and more than 1,000 parents are brought together in a few days a few days. It turned out that the parent of a child had been taken away by the police on charges of smuggling for buying a special medicine from a private person.

Then the parents of these children with rare diseases gathered together to ask the police for help, hoping to release the parents of the child.

What do netizens think of this matter?

I also searched on the Internet and found that netizens' views on this matter are very neutral, some people especially support the actions of these parents, and some people think that the parents' actions are obstructing the law enforcement of the police, which is a wrong behavior. However, it is believed that if parents want to ask for help, they can also go to the police station for help, and there is no need to ask for joint help on the Internet. Therefore, we can't post some remarks on the Internet at every turn, which is very bad, and we must protect our rights and interests through formal channels.

Summary. When we encounter some things, we can directly go to the police or go to the court for help, and it is best not to post some remarks on the Internet, because people on the Internet are mixed, and they may not understand the truth of this matter, so they draw conclusions, which is very bad.

The country should not give up on these children with rare diseases, because these children are also the hope and part of the country, so these children should also be valued by everyone.

This is a very pitiful thing, everyone wants their children to be healthy, so they will ask for help in this way, and also hope to get help from many hospitals.

I think this is very sad, and I want to help these children with rare diseases through my own modest strength.

Because these children are suffering from rare diseases and there is a scarcity of drugs on the market, they will join forces to seek medicine. <>

Recently, WeChat has been swiped by the help messages of these parents, who are all asking for medicine for their children. According to the reporter's understanding, the children of the parents in these WeChat groups generally suffer from infantile spasms, Otahara syndrome, tuberous sclerosis and other diseases. These diseases are all rare diseases, and there is a great shortage of drugs on the market.

Therefore, they organized thousands of parents to sign their real names, hoping that the whole society could help them. According to statistics, more than 1,000 children need to take a certain drug, but unfortunately, most of them are already at risk of discontinuation. <>

Previously, a family member of a child in Henan Province was taken to the police station on suspicion of smuggling and trafficking because he bought a certain kind of medicine for the child. As a result, the controversy over this matter began to ferment, and we can't help but think of the very famous movie "I Am Not the God of Medicine", whose plot is very similar. In the face of law and life, how should we choose?

This is a thought-provoking topic. It is understood that this drug is a broad-spectrum anti-epileptic drug for such rare diseases. Children with epileptic encephalopathy may reverse, which may last a few minutes or even a day.

If not rescued in time, it is likely to die. <>

Under normal circumstances, if the drug is safe, then the relevant ** supervision will inevitably not be regulated. If the medication cannot be purchased through normal channels, these parents will think of buying it from a third party. Although parents are at fault, as parents, you can't watch your children die.

We can only say that this matter is understandable as a bystander. It has to be said that being a parent is really hard, and when people are in the most desperate situation, there is no good way but to take risks.

Mainly because some rare diseases have occurred in Henan, and now the effect is not very good, so it is necessary to expand its influence.

The reason is that many of the medicines needed by sick children are stranded overseas, so these family members have no choice but to jointly ask for medicine from **.

In fact, it is the parents of these children with rare diseases who have been unable to get these drugs that can save their children for various reasons, so they will make a joint request.

These babies with rare diseases are delayed because they can't get a specific drug**, and parents are asking for medicine together, just to be able to get some life for their children.

It is because there are many children with rare diseases in Henan, and this medicine is also very expensive and difficult to obtain, so many parents are linked together and want to rely on everyone's strength, so that they can seek medicine together.

Because the children of these families are suffering from rare diseases, as parents, they will definitely do their best to protect their children. So, these parents, without permission, found a third party, as we all know, the domestic market, as long as you want, there is nothing you can't buy, the same is true of this drug, however, we have to be clear, no matter what kind of thing you do, don't defy the law, these parents, can only be described in one sentence, pity the parents of the world, this drug is currently not subject to state control, it is precisely because of this, so it can not be bought in the market, we must be clear, if it is a good drug, In the final analysis, the country is for the good of our people, and we must also believe in the country, as far as this issue is concerned, I have the following other views: <>

First of all, we need to understand why this drug is not regulated by the state. Needless to say, there is an unreasonable and unqualified problem of this drug, under normal circumstances, if the drug is safe, then the relevant supervision of ** will inevitably be accepted, and the drug cannot be bought on the normal channel, these parents will think of buying it from a third party, although the parents are at fault, but, as a bystander, I think this problem, the punishment of ** should think twice, after all, the parents' approach is because of love, not for themselves. <>

It can only be said that this matter is understandable as a bystander, after all, if this kind of thing happens to you one day, I think, we should also be this practice, according to reliable understanding, the mother has appealed, moreover, the local court has also accepted it, the final result is extenuating, I have to say, as a parent is indeed very great, but people in the most desperate time, there is no good way, so, the things that are done, naturally lack of fire. <>