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The government introduced new drugs for patients with rare spinal muscular atrophy (SMA) The mother of the patient, the mother of Wu Bolin, said that his son had a better function after using the new drug and asked him "you are scared and miraculous". Lin Zhengyue, the general manager of the introduction of new drugs in Hong Kong, said the government attaches great importance and was willing to bear the medical needs of patients with rare diseases, and categorically said that "l & rsquo; Money is a problem ".
The 20th anniversary of the Spinal Muscular Foundation Dystrophy Charity Foundation, specializing in the publication of the new book "Love Life and Life", brings together the struggling stories of 12 patients whose one main character is the submission of more than 100 pages to the Chief Executive last October. Zhou Peishan, a patient who asked the government to introduce new drugs to the United States.
The title of the book is inscribed by the artist Andy Lau, and the general manager Lin Zhengyue is newer. When Lin Zheng attended the event yesterday, he said that after receiving Zhou Peishan's plan the same day, he personally wrote to the US pharmaceutical company to show the importance and the Hong Kong government commitment to the incident.
Wishing to continue to help rare patients
She reiterated that the government will continue to work hard to help patients with rare diseases.
At the present time, Marcus, only 7 years old, is the first patient to take this medication: he developed symptoms at the age of one and a half and started to receive new drugs at the end of May.
Marcus' mother, Wenus, pointed out that the use of aerosol by his son was reduced, that his ability to move and talk improved significantly and that his ability to swallow and chew better. I do not feel tired at the same time. The son even gently waved his weak hand and asked Wenus, "Are you scared with a miracle?" Wenus pointed out that Marcus' progress, the family is happy to "indescribable."
"Yu Fandu is a bonus"
However, she only hopes that the situation of her son Marcus will not be worse: "You can be fan of Yu Fan", it also means that his son loves cartoons Japanese and wants to play in Japan. I hope my son will be in a stable situation in the future and that he will be able to take her on a plane to travel.
Promoting the government to help register new drugs as soon as possible
Huo Chen Meiling, chairman of the Spinal Muscular Dystrophy Charity Fund, recorded the story of his son and the history of creation of SMA in "Love Life and Unlimited Life". She hopes that the new book will enhance Hong Kong's understanding and concern about the ADM and will continue to promote the development of the Foundation. She also urged the government to establish a clear timetable for the registration of new drugs in Hong Kong as soon as possible and to announce specific guidelines for the application of the Fund for Extremely Expensive Drug Grants to allow more patients to benefit.
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