Rare diseases, in general, refer to the diseases with low prevalence or affecting very few patients. There are nearly 8,000 different types of rare diseases, affecting about twenty million people in China. In May 2018, the National Health Commission of the People’s Republic of China and other five ministries and administrations jointly issued China’s First National List of Rare Diseases, which includes 121 rare diseases, and the national list will be reviewed regularly. Almost no rare diseases can be cured. Patients with rare diseases face enormous challenges in many aspects of their daily life, including medical care, rehabilitation, and social inclusion. Not only do they have difficulties in receiving accurate diagnosis and/or proper medical treatment they also encounter misunderstandings, discriminations, and serious lack of institutional protection.

In the summer of 2014, the China-Dolls Center for Rare Disorders in alliance with Sina Weibo, introduced the worldly renowned“ the Ice Bucket Challenge”to China. Such campaign successfully promoted public awareness and social support for Amyotrophic L ateral Sclerosis (AL .S) and other rare diseases. In furtherance of the sustained attention andvigorous support from the society, the China-Dolls Center for Rare Disorders and the Narada Foundation jointly founded the lIness Challenge Foundation (ICF). The Foundation is dedicated to integrating social resources and establishing a larger platform to transform the social support for the rare diseases community into an efficient, effective and sustainable mechanism.

The Beijing Illness Challenge Foundation (ICF) is the first public welfare foundation in Beijing focusing on rare diseases. Through patient services, community development, and social advocacy, the ICF is devoted to solving pressing problems faced by the rare disease communities on the one hand and promoting an equal and respectful social environment for rare disease communities on the other. Inspired by the “Ice Bucket Challenge”, the ICF was founded on the 29th February, 2016, the 9th International Rare Disease Day. The ICF is committed to creating and providing opportunities for rare disease patients on medical care, rehabilitation, education, employment, and social inclusion. It also focuses on empowering patient organizations, building platforms for multiple stakeholders, creating signature projects with strong public engagement, promoting institutional support for rare diseases, and solving pressing problems faced by the rare disease communities. By doing so, the ICF aims to create a supportive, righteous, and inclusive social environment with everyone’s rights respected regardless of the disease one suffers from or the challenges one faces.

Mission: To solve urgent matters faced by the rare disease community by keeping the patients at the center, empowering the community, promoting innovation, and collaborating with multiple stakeholders.

Slogan: Born to Challenge