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

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.

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.

This will bring good news to the families of children with rare diseases, let these parents see hope, and will also give these children a chance to give birth to Bu Min, so that everyone can reduce the financial burden on the family.

Being able to reduce the burden on these families can save them a huge amount of money, and can make them happier.

This can reduce the burden on families of children with rare diseases, and the cost of medical treatment has been greatly reduced, and the burden of medical treatment on families has also been reduced.

Behind every rare disease patient is a broken family, what are the ways to help rare disease patients in China?

Behind every rare disease patient is a broken family, what are the ways to help patients with rare diseases in China? Hello dear. The ways to seek help for rare diseases in China include publishing the corresponding help information on social **, helping everyone through the community spine Shenzao, and the inclusion of rare disease drugs into the hospital, the state to a certain extent to give strong support and assistance, and directly applying for the corresponding subsidy from the rare disease medical assistance project.

For most patients with rare diseases, their lives will be seriously affected, because the drugs for each rare disease are often very expensive, and many patients simply cannot afford to eat them, but in order to better dress themselves, the family can only choose to bear it, so it often leads to the fragmentation of the family. However, for many families, we can help ourselves through some corresponding ways, such as making relevant stories into corresponding news, directly publishing relevant help information through TV or social networking platforms, and getting through the difficulties through the strength of the society, and the country will include rare disease drugs in medical insurance every year, and we can wait slowly.

The ways to seek help for rare diseases in China include publishing the corresponding help information on social **, helping everyone in the society, and the inclusion of rare disease drugs into the hospital, the state to a certain extent to give strong support and assistance, and directly applying for the corresponding subsidy to the rare disease medical assistance project.

For most patients with rare diseases, life will be seriously affected, because the drugs for each rare disease are often very expensive, and many patients simply cannot afford to eat, but in order to better themselves, the family can only choose to bear it, so it often leads to the fragmentation of the family. However, for many families, we can help ourselves through some corresponding ways, such as making relevant stories into corresponding news, directly publishing relevant help information through TV or social networking platforms, and getting through the difficulties through the strength of the society, and the country will include rare disease drugs in medical insurance every year, and we can wait slowly.

There is basically some public welfare in each city, for these rare disease patients to provide some help, such as in Zhejiang Province there is a rare disease medical assistance project, if you have a rare disease, you can actively apply for the corresponding subsidy to the project to protect yourself, of course, there are many corresponding drug purchase assistance and drug clinical trials, we in this process as long as we and their families understand the relevant situation in a timely manner, through the social charity ** can enjoy the structural assistance measures of these innovative drugsGenerally, we only need to pay 50% of the money, and the rest will be paid by the corresponding charity**.

Patients with rare diseases can seek social help through the above corresponding ways, in short, do not give up the hope of life in life, if you can't persevere, you can go to the society to publish their stories into news, and seek more people in the society to help themselves, because everyone to give a love then this power is endless.

1. Crowdfunding platform. You can seek help from caring people through online crowdfunding and mutual aid platforms; 2. You can bring the case and diagnosis certificate to the civil affairs bureau of the county, city or district where you are located to submit an application for assistance. After the application is successful, the local Red Cross Society will be approved with the relief materials, and the rare disease assistance will be distributed.

You can contact the country's medical team for **, or you can make a drip or other donation to get relief funds, and you can also take out a loan.

Now there will be many rare diseases and rare diseases in China, and funds can be raised through these platforms of Shuidi Fund. You can also follow some related forums. Find resonance in this way.