“Survey of Rare Childhood Diseases” released in Beijing

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The China National Children’s Center (CNCC) and the China Children’s Rare Diseases Relief Fund (CCRF) jointly held a ceremony on January the 18th to celebrate the anniversary of the CCRF’s founding and the publication of the book “A Survey of Rare Childhood Diseases”. Mr. Fan, the secretary general of CCRF, explained that the book includes 15 real stories of children suffering from rare diseases; by telling readers their stories of disease-led poverty and insufficient health care and about the medical aid they received, the book seeks to appeal for more social attention for this social group and to provide information for related future aid policies. During the ceremony the accomplishments of the CCRF were also reviewed and its work plans for 2016 were announced.

Rare diseases are diseases whose sufferers account for 0.65%~1% of the global population, according to the World Health Organization. There are five to six thousand kinds of internationally-recognized rare diseases. With about 16 million sufferers of rare diseases in China, most of them children and teenagers, who face problems ranging from social discrimination to the struggle to find medicine, poverty caused by their disease and the lack of relevant social security policies, this issue urgently needs to receive the attention of the public.