Delegate: Blue Whale Rare Disease Special Fund 蓝鲸罕见病专项基金
Affiliation: Shanghai Charity Foundation 上海市慈善基金会
Short Bio (optional):
Blue Whale Rare Disease Special Fund established in 2021, subordinate to the Shanghai Charity Foundation. With the purpose of support, care and companionship, we focus on patient education, patient empowerment, providing sustainable assistance for rare disease patients and their families all over China. Among all kinds of rare diseases, Narcolepsy projects have been one of the prior since sleep issue affects life quality. As known China owns high population, whereas less than 6,000 cases with Narcolepsy have been registered in major sleep centers among China, 2/3 of which are children in school-age. The fund strives to shorten the diagnosis path for Narcolepsy patients. Many potential patients are not aware of the disease. Therefore, through sleep knowledge education, we aim to locate hidden potential patients,
help improve their living condition. In the meantime, the public benefit from learning the importance of healthy sleep.
Activity or Activities:
In the past 15 years, various hospitals and mass media in China had carried out different sleep activities on world sleep days. This year, on the 16th World Sleep Day 2023 in China, initiated by the Blue Whale Rare Disease Special Fund, with the support of Dr. Fang Han, MD, general secretary of World Sleep Society and co-chair of WSD 2023, a large-scale campaign involving top tier sleep experts, patient groups, public, mass media has been held, turned independent voices into a loud clear message —— Sleep is Essential for Health.
- Highlights no. 1: Build a bridge of art as creative way of sleep education ‘Rare Dream —— One In Ten Thousand’ is an art exhibition that cares for patients with rare sleep disorders. Artists and volunteer painters were invited to paint dreams from
narcolepsy patients. Some patients who have desire to express are welcome to paint by themselves. The art exhibition displayed dozens of rare dreams which became a precious bridge connecting the public and the patients. Moreover, it has broken the cognitive barriers of learning sleep disorders. Over the bridge, that’s the way out… by artistic expressing, by saying the real dreams out loud even if it’s nightmare…
- Highlights No. 2: Sleep Knowledge education with wider coverage and in-depth contents.
a. National-wide coverage — 18 top sleep experts from 15 sleep centers and institutes of public hospitals participated in the Sleep Knowledge education by giving sleep lessons via whole-day live-streaming.
b. Breadths of sleep topics that converted into simple language — To welcome more audience as possible, 16 sleep terms such
as sleep cycle, OSA, insomnia, REM… were all converted into user-friendly topics related to their life and doubts. One example “Coronasomnia” — “ Anxiety, depression and sleeplessness after covid-19? Be aware of Coronasomnia.”
c. Full year campaign rather than one day event — Regarding to geographical restrictions, the fund cooperated with 3 mainstream social platforms in China — Kuaishou, Weibo, WeChat. 3 online accounts that launched on Mar 17, aiming to deliver the key message “Sleep is essential for health” continuously throughout the year 2023. Making the 3 online platforms sustainable, educational, supportive.
Date of Activity: From March 17 throughout the whole year 2023
Submitted by: Blue Whale Rare Disease Special Fund