International Rare Disease Day, make "rare" no longer "rare"

International Rare Disease Day

February 28 this year is the fifteenth “International Rare Disease Day”

Rare diseases, as the name suggests, refer to a class of diseases with a relatively low incidence. Due to the “rareness” of rare diseases, it is often difficult for patients with rare diseases to receive good medical services, and even in severe cases, there is no cure.

In addition, rare disease patients are vulnerable to social misunderstandings. It is precisely to eliminate the public’s misunderstanding of rare diseases and guide the general public to form a correct understanding of rare diseases, such a rare disease day setting is undoubtedly necessary.

International Rare Disease Day, initiated by Europe Organization for Rare Diseases (EURODIS) on February 29, 2008 and Organized the first International Rare Disease Day. The first commemorative activities of the International Rare Disease Day were successfully held in various European countries, promoting social awareness of rare diseases through various activities. February 28, 2009 Europe , North America , Latin America span> More than 30 countries including rare disease organizations participated in the activities of the second International Rare Disease Day. After that, with the unanimous support of all countries, the last day of February every year was designated as the International Rare Disease Day.

Rare Diseases Known in China span>

Frozen people

Myasthenia gravis

Juvenile Parkinson’s disease

hemophilia

pulmonary lymphangiomyomatosis

Spinal cerebellar ataxia

Osteogenesis imperfecta, also known as porcelain doll

Gaucher disease

Pompe disease

Niemann-Pick disease

Epidermolysis Bullosa

Kahlmann’s syndrome

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Acromegaly

Behçet’s syndrome, also known as Behçet’s disease

There are many editors who will not list them one by one. Those who want to know more can inquire by themselves.

with Small groups of various rare diseases have gradually attracted the attention of the society, and more professionals have devoted themselves to related research and drug development, medical and social security undertakings, giving more care to patients and their families.

Let the rare be seen and the love not rare.

END

Editor: Zhou Zhifan

Production: Hao Lin

Editor: Miaomiao