In this piece Xu Yongguang, vice chairman and secretary general of the Narada Foundation and vice chairman of the China Youth Development Foundation, says that the “ALS Ice Bucket Challenge” has overall been beneficial. In a less prominent cause such as rare diseases, the sudden limelight and influx of donations and public support the phenomenon provided are a miracle. The public participation dimension of the campaign not only helps fundraising but also cultivates people to give happily and voluntarily.
Mr Xu also explains the need to use this campaign to develop the Chinese NGOs sector. During this time of heightened attention, people working in the sector should collectively promote the establishment of a foundation focusing on rare diseases and lobby the government to grant it registration status as a public fundraising foundation.
Finally, four measures should be taken to improve the service provided to people with rare diseases: treatments improving their living conditions should be developed, public policies should be modified as many types of rare diseases are not included under the scope of persons with disabilities and therefore rare diseases patients are not eligible for benefits under the current health care system, registration procedures should be eased for charities working with these patients so that they can operate more smoothly and their staff should be trained to provide more better services to patients.
