Since 2017, Wandou Sir and the Beijing Pain Challenge Charity Foundation have launched China's first rare disease science popularization series for the public - the "Rare Diseases: Born to Be Extraordinary" heart-warming science popularization series .
Over the past 6 years, we have produced original popular science for 72 rare diseases (categories) , covering 55 rare diseases (categories) included in the first batch of "China Rare Disease Catalog"; benefiting more than 500,000 individual patients , accumulating With nearly 10 million reads , it has become the most influential popular science series in the field of rare diseases in China.
Wandou Sir always adheres to the science popularization concept of professionalism , neutrality , public welfare , and humanistic care . The production funds for the heart-warming science popularization series "Rare Diseases: Born to Be Extraordinary" all come from charity donations , and rare disease patients / family members are invited to participate in the creation of popular science.
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The creative team behind Heartwarming Science Popularization
Our creative team has a total of 8 people.
Among them, five friends are rare disease patients or family members.
Three are professionals in the fields of genetics and new media.
On this 99th Charity Day, you are welcome to support the public welfare of rare disease science and let every "extraordinary" life be seen, understood, respected, and receive better treatment and care.
Pea Sir Rare Disease Popular Science Catalog (2023)
Sort alphabetically by the English name of the disease
Chinese name
English name
"China Rare Disease Catalog" No.
Acromegaly
not included
Albinism
2
Alport syndrome
3
Alstrom syndrome
not included
Amyotrophic lateral sclerosis
4
androgen insensitivity syndrome
Androgen insensitivity syndrome
not included
Angelman syndrome
5
Behçet disease
not included
Charcot-Marie-Tooth disease
17
congenital adrenal hyperplasia
Congenital adrenal hyperplasia
Contains 1
CSF1R- related leukoencephalopathy
CSF1R-related leukoencephalopathy
not included
Cushing's syndrome
not included
Duchenne muscular dystrophy
Belongs to 98
Dystonia
Contains 95
Fabry disease
27
Facioscapulohumeral muscular dystrophy
Facioscapulohumeral muscular dystrophy
Belongs to 98
FGFR -associated craniosynostosis syndrome
FGFR-related craniosynostosis syndromes
not included
Gaucher disease
31
Glycogen storage disease type II/Pompe disease
Glycogen storage disease type II/Pompe disease
Belongs to 35
Hemophilia
36
Hepatolenticular degeneration/Wilson disease
Hepatolenticular degeneration / Wilson disease
37
Hereditary angioedema
38
hereditary epidermolysis bullosa
Hereditary epidermolysis bullosa
39
Hereditary spastic paraplegia
43
Homozygous familial hypercholesterolemia
Homozygous familial hypercholesterolaemia
46
Huntington's disease
47
Hypophosphatemic rickets
51
Idiopathic hypogonadotropic hypogonadism
Idiopathic hypogonadotropic hypogonadism
53
Inflammatory myofibroblastic tumor
Inflammatory myofibroblastic tumor
not included
Inherited ichthyosis
not included
Joubert sydrome
not included
Kabuki syndrome
not included
Kallmann syndrome
not included
Langerhans cell histiocytosis
60
Congenital amorosis
not included
Lesch-Nyhan syndrome
not included
64
Marfan syndrome
68
Maternal 15q duplication syndrome (dup15q)
Maternal 15q duplication syndrome
not included
Methylmalonic acidemia
71
Mitochondrial disorders
Contains 62, 72
Mucopolysaccharidosis
73
Multiple sclerosis
76
Myasthenia gravis
Contains 32
Neurofibromatosis
not included
Neuromyelitis optica
81
Neutral lipid storage disease
not included
Nevoid basal cell carcinoma syndrome/Gaulin syndrome
Nevoid basal cell carcinoma syndrome / Gorlin syndrome
not included
Niemann-Pick disease
82
Ornithine carbamoyltransferase deficiency
Ornithine transcarbamylase deficiency
85
Osteogenesis imperfecta
86
Paroxysmal dyskinesia
Involving 95
not included
Peutz-Jeghers syndrome
89
Porphyria
92
Prada-Willi syndrome
93
primary immunodeficiency disease
Primary immunodeficiency diseases
Contains 28, 94, 104, 118, 119, 121
Pseudohypertrophy muscular dystrophy
Belongs to 98
Propionic acidemia
99
Retinoblastoma
103
Right Syndrome
not included
Scleroderma
Contains 112
Severe myoclonic epilepsy/Dravet syndrome in infants
Severe myoclonic epilepsy in infancy / Dravet syndrome
105
Silver-Russell syndrome
107
Spinobulbar muscular atrophy/Kennedy disease
Spinal bulbar muscular atrophy / Kennedy's disease
109
Spinal muscular atrophy
110
111
Tuberous sclerosis complex
114
WAS-related disorders
Contains 118
X-lined adrenoleukodystrophy
120
X-linked congenital adrenal dysplasia
X-linked adrenal hypoplasia congenital
19
Young-onset parkinson disease
Belongs to 87
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Click on the blue Chinese name to view the heart-warming popular science series "Rare Diseases: Born to Be Extraordinary" .
Click on the red English name to view the medical humanities column "Rare Diseases: The Benevolence of Doctors" .
Inclusion refers to diseases whose scope is greater than the corresponding number in the "Chinese Rare Disease Catalog".
It refers to diseases whose scope is smaller than the corresponding number in the "Chinese Rare Disease Catalog".
Involved means that the scope of the disease overlaps with the corresponding numbered disease in the "China Rare Disease Catalog" , but does not belong to each other .
To ensure the professionalism of science popularization, each issue of rare disease science popularization is rigorously reviewed by clinical experts. So far, 67 experienced clinical experts (teams) from 39 hospitals and research institutions across the country have participated in the popular science review. Sincerely thank every expert for their selfless support and careful guidance!
Rare disease science popularization and review experts
Sort alphabetically by the pinyin of the hospital/doctor’s name
Hospital
doctor
Institute of Neurology, Anhui University of Traditional Chinese Medicine
Han Yongsheng
Peking University Third Hospital
Wang Liping
Beijing University First Hospital
Wang Jingmin team
Wang Chaoxia
Yang Yanling
Zhang Wei
Zhang Yuehua
Beijing Union Medical College Hospital
Zhi Yuxiang
Dai Yi
Lu Lin
Mao Jiangfeng
Kouhei
Xu Kaifeng
The First Affiliated Hospital of Fujian Medical University
Wang Zhiqiang
Children's Hospital of Fudan University
Du Xiaonan
Li Ming
Wang Wenjie
Wang Yi
Huadong Hospital Affiliated to Fudan University
Cai Jianfei
Huashan Hospital Affiliated to Fudan University
All over
Zhao Chongbo Team
The First Affiliated Hospital of Guangzhou Medical University
Liu Jie
National Institute of Science and Technology of the National Health and Family Planning Commission
Romina
The Second Hospital of Hebei Medical University
Zhang Songjun
Tongji Medical College Affiliated to Huazhong University of Science and Technology Tongji Hospital
Hu Qun
Air Force Medical University Tangdu Hospital
Li Zhuyi
The Second Affiliated Hospital of Kunming Medical University
Zhou Zeping
Dermatology Hospital of Southern Medical University
Lin Zhimiao
Shandong University Qilu Hospital
Wen Bing
Affiliated Provincial Hospital of Shandong First Medical University
Shang Xiaohong
Sun Hong
Xu Chao
Yao Yangyang
Ninth People's Hospital Affiliated to Shanghai Jiaotong University School of Medicine
Qiao Jie
Zhu Hui
The Sixth People's Hospital Affiliated to Shanghai Jiao Tong University School of Medicine
Cao Li team
Huang Xiaojun
Tian fertile soil
Ruijin Hospital Affiliated to Shanghai Jiaotong University School of Medicine
Su Tingwei
Sun Qingfang
Shanghai Children's Medical Center Affiliated to Shanghai Jiao Tong University School of Medicine
Wang Xiumin Team
Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine
Lin Fujun
Qiu Wenjuan
Shenzhen Children's Hospital
Pan Lili
Shenyang He Eye Hospital
Pang Jijing
Children's Hospital Affiliated to Capital Institute of Pediatrics
Shi Xiaodong
Beijing Anzhen Hospital Affiliated to Capital Medical University
Wang Luya team
Xu Shangdong
Beijing Chaoyang Hospital Affiliated to Capital Medical University
Lu Ming
Beijing Children's Hospital Affiliated to Capital Medical University
Cao Zhenhua
Tian Xiaojuan
Zeng Qi
Beijing Tongren Hospital Affiliated to Capital Medical University
Wei Aihua
West China Hospital of Sichuan University
Liu Yi
Shang Huifang Team
Second Affiliated Hospital of Zhejiang University School of Medicine
nursery
Wu Zhiying team
Children's Hospital Affiliated to Zhejiang University School of Medicine
Zou Chaochun
Chinese People's Liberation Army Air Force General Hospital
Ning Shoubin
Sun Tao
General Hospital of the Chinese People's Liberation Army (301 Hospital)
Meng Yan
The Third Medical Center of the Chinese People's Liberation Army General Hospital
Zhang Shu
Central South University Xiangya Hospital
Peng Jing
China-Japan Friendship Hospital
Gu Weihong
Wang Wei
The First Affiliated Hospital of Sun Yat-sen University
Tang Wen
Children's Hospital Affiliated to Chongqing Medical University
Zhu Min
For more than 6 years, we have provided science popularization services to 65 rare disease patient communities across the country - customizing science popularization content according to the real needs of each community , and sharing science popularization copyrights for free . With the support of Tencent Charity, we have helped 10 The patient community raised more than one million yuan .
Rare disease science popularization·cooperative community
Sort alphabetically by patient community name
Alstrom Syndrome Greater China Association
CAH and AHC Mutual Aid and Exchange Center
CAH Mutual Aid House
Cure Yoyo SF Rare Disease Special Fund
dup15q China Mutual Aid Alliance
IMT Rare Disease Care Center
ITP Home for Platelet Patients
LSM Mutual Aid Association
MMA&PA Home
NMO Shanghai Home
Come on PID Baby Care Center
SRS is rare and powerful
Beijing Aili Myasthenia Gravis Rare Disease Care Center
Beijing Behcet's Disease Rare Disease Care Center
Beijing Pain Challenge Charity Foundation
Beijing China Doll Rare Disease Care Center
Beijing Oriental Silk Rain ALS Rare Disease Care Center
Beijing Butterfly Tuberous Sclerosis Rare Disease Care Center
Beijing Kangxin Marfan Syndrome Care Center
Beijing Penguin Home Cerebellar Atrophy Patient Care Center
Beijing Meier Spinal Muscular Atrophy Care Center
Beijing Love Duchenne Muscular Dystrophy Care Center
Diliangolin Syndrome Alliance
Porphyrin Care Center
Rainbow fish baby communication group
Chengdu Zibeike Public Welfare Service Center
Stepper Hereditary Spastic Paraplegia Care Center
Hypophosphatemic Rickets Care Home
Polytheistic Home (Multiple Sclerosis Home, NMO Stereo)
Patients with paroxysmal movement-induced dyskinesia—PKD Home
Fabray Patients Association
Gaucher disease care center
Peutz-Jeghers Syndrome Care Center
HongmiLi FH Care Center
Kennedy Rare Disease Care Center
Lanmei Lymphangioleiomyoma Rare Disease Care Center
Old K's House
Highlights Connecting Rare Disease Care Homes
Neiman Peak Care Center
You Are Not Alone FSHD Care Organization
Urea Cycle Disorders Home
Pompeii Rare Disease Care Center
Hypercortisolism Alliance
Parkinson's Home for Young People
Shanghai Debo Butterfly Baby Care Center
Shanghai Pudong Hyacinth Huntington's Disease Care Center
Shenzhen Anreit Syndrome and Rare Disease Research Institute
Shenzhen Anhao Peroneal Muscular Dystrophy Rare Disease Care Center
Shenzhen Paopaojiayuan Neurofibromatosis Care Center
Shenzhen Rubei-Joubert Syndrome Care Center
Stone Bone Baby Rare Disease Care Home
Angelman Syndrome Home
Teletubbies - Mitochondrial Encephalomyopathy Care Center
Tongwa Rare Disease Care Center
Wuhan Dongxihu District Hemophilia Home Rare Disease Assistance and Care Center for the Disabled
Moon Children's Home, Lianhu District, Xi'an
Snowdrop Care Center
Swift Angioedema Care Center
Zhejiang Xiaopang Willi Rare Disease Care Center
China Alport Syndrome Parents Association
Chinese Pituitary Adenoma Collaborative Group
China Peimei Disease Care Center
Canbaoer Social Work Service Center, Jiulongpo District, Chongqing
Advocated by Zhuo Wei (Focus on Dravet)
In the future, we will continue to create more high-quality rare disease science popularization, covering more rare disease types and communities, so that every "born extraordinary" life can be seen, understood, respected, and receive better outcomes. Treatment and quality of life.
We look forward to your love being injected into our efforts and working together to light up the light of hope for the rare disease community, so that rareness can be seen and good things can happen!
Every time you share, collect, like, and watch
It is precious encouragement to Wandou Sir
