Don't let rare diseases and lifelong treatment overwhelm you.
An An is the oldest in the family. He also has two sisters. For a patriarchal family, the arrival of a son has brought countless laughter and laughter to this family. But it backfired. Ann sat, crawled and walked slower than her sister when she was a child. Two years old can't talk, and three years old is limping.
After examination, Ann was diagnosed with a rare genetic and metabolic disease-methylmalonacidemia.
This is a congenital genetic disease, which can be controlled by drug treatment, but it needs lifelong treatment.
When I heard that the child's illness could be cured, Ann's parents' hanging heart was finally put down. Once again, I heard that I had to take medicine for life and have long-term rehabilitation training, and the fire of hope lit by my parents was extinguished instantly.
Ann's family is not rich, because Super Life has paid a large fine, and in recent years, she has been treated and trained in thousands of places, and her family has long been poor. Fortunately, methylmalonacidemia is a rare childhood disease.
The experts learned about the actual situation of An An's family and helped An An to apply for medical assistance in the hospital. An An's expenses for examination and treatment in the Children's Hospital affiliated to Shandong University can be saved. A week after taking the medicine, An 'an's condition has been well controlled, fatigue, lethargy and limb jitter are gone, and nerve injuries such as walking and limping are also in rehabilitation training.
There are quite a few children suffering from rare diseases like Ann. In the Institute of Pediatrics of Children's Hospital affiliated to Shandong University, more than 4,500 cases of hereditary birth defects were detected in 2065,438+04-2026,5438+0 years, and more than 0/00 cases of rare diseases were found at home and abroad, including 20 cases of the first family of rare diseases in the world.
In order to improve the diagnosis and treatment level of children with rare diseases and pay attention to the quality of life of children with rare diseases, as early as 20 18, the Children's Hospital affiliated to Shandong University donated 3 million yuan to jointly launch the angel health special fund and the medical assistance project for children with rare diseases in poor families. More than 60 children from poor families with rare diseases were provided with medical expenses subsidies, which reduced the medical burden on their families.
Only 202 1 year saved 3 1 person, including retinoblastoma, Turner syndrome, methylmalonacidemia, growth hormone deficiency, Langerhans histiocytosis, spinal muscular atrophy, tuberous sclerosis, hepatolenticular degeneration, ornithine carbamoyl transferase deficiency, mitochondrial encephalomyopathy and other diseases1person. The amount of assistance is 65.66.
Who are the recipients of the medical assistance program for children with rare diseases?
Only children treated in the Children's Hospital affiliated to Shandong University (Jinan Children's Hospital), the designated medical institution of the project. Specifically, children with rare diseases under 18 diagnosed and treated in the Children's Hospital affiliated to Shandong University can only get medical assistance if they meet the following conditions.
Priority can be given to the following situations:
1, first application for priority assistance; 2, low-income, low-income families to give priority to rare diseases; 3. Families with more than two patients in the application family are preferred; 4, has been included in the medical insurance or other joint assistance, but still unable to pay for rare patients with priority assistance;
What diseases are expected to receive medical assistance?
At present, the number of rare diseases in children has increased to nearly 50. See the figure below for specific rescue diseases:
What is the standard of project assistance for children with rare diseases? How to rescue the project? What is the standard of assistance?
The specific rescue mechanism is as follows:
1, with special drugs or special foods, the out-of-pocket expenses for outpatient service are more than 3,000 yuan and less than 4,000 yuan, and the subsidy standard for medical expenses is 3,000 yuan.
2, there are special drugs or special food, outpatient out-of-pocket expenses more than 4000 yuan (inclusive), according to 75% of the out-of-pocket expenses to be subsidized, the maximum subsidy is 10000 yuan (inclusive).
3, no special drugs or special food, symptomatic treatment of surgery, surgery patients pay more than 3000 yuan (inclusive), less than 4000 yuan, medical expenses subsidy standard is 3000 yuan.
4, no special drugs or special food, symptomatic treatment of surgery, surgery patients pay more than 4000 yuan (inclusive), according to 75% of the out-of-pocket expenses to be subsidized, the maximum subsidy amount is 30000 yuan (inclusive).
5. There are no special drugs or special foods, only the expenses such as assistive devices and auxiliary drugs are not reimbursed.
How do parents apply for assistance?
1. Children's legal guardians apply and fill in the Personal Application Form for Children's Rare Disease Relief Project as required; And provide relevant information.
2. The outpatient department of the designated medical institution of the project assists the parents of children to improve and review the diagnosis certificate, outpatient (emergency) diagnosis records, hospitalization home page and medical records, discharge records, and the original report of relevant medical imaging materials (or a copy with the official seal of the hospital).
3, the project designated medical institutions departments to review the above materials submitted to our hospital medical department.
4. The Medical Department organized an expert group to conduct preliminary examination and review of the application materials for children, and reported them to the Shandong Poverty Alleviation and Development Foundation (hereinafter referred to as the Foundation) after the review was correct.
5. After verification, the Foundation will allocate the corresponding aid money to the bank account of the aided children or their guardians, and feed back the list and amount of the aided children to the medical department of the project management institution.
Note that parents need to submit the following application materials:
1, individual application form for children's rare disease relief project.
2. The parents of the child provide a recent photo of the child, a legal guardian's household registration book, and a copy of the ID card;
3. Proof of family financial difficulties. A copy of the certificate of poor households with low security and low income, or the original poverty certificate issued by the village (neighborhood) Committee.
4, in children's hospital departments to assist parents to improve and review the diagnosis certificate, door (emergency) diagnosis records, hospitalization home page and medical records, discharge records, related medical imaging data report (or a copy of the official seal of the hospital).