基金会缘起 (History of the Foundation)
In the summer of 2014, the China-Dolls Center for Rare Disorders and Sina Weibo initiated “the Ice Bucket Challenge" in China, to promote public awareness and support for Amyotrophic Lateral Sclerosis (ALS) and other rare diseases. “The Ice Bucket Challenge” soon swept the country. Passion for the activity was gone in a flash, whereas the “painful challenges” that rare disease community has to face every day require a long-term effort with persistence from different actors to resolve and conquer.
Rare diseases are chronically debilitating or life-threatening diseases with very low prevalence. There are about 7,000 rare diseases recognized internationally, 80% of which are caused genetically. Most rare diseases lack efficient and effective treatments, which often leads to life-long disabilities or even costing patients’ lives. Patients with rare diseases faces enormous challenges in many aspects of their daily lives — from medical care and rehabilitations, education and employment, to social inclusion. Families often fall into poverty due to high amount of medical expenses and the lack of benefits and support from the social security system.
为了社会各界能够继续保持参与“冰桶挑战”的热情，持续关注和支持各类罕见病群体，瓷娃娃罕见病关爱中心和南都公益基金会联合发起成立了北京病痛挑战公益基金会，简称“病痛挑战基金会”（英文：The Illness Challenge Foundation，简称：ICF）。本基金会希望搭建更大的平台，整合社会资源，推动行业发展，将各界对罕见病群体的支持，转化为建立长期解决该群体问题的有效机制。
In furtherance of the passionate, active participation and support from “the Ice Bucket Challenge”, the China-Dolls Center for Rare Disorders, and the Narada Foundation jointly founded the Beijing Illness Challenge Foundation (ICF). The Foundation is dedicated to establishing a large platform to integrate social resources, promote the development of the nonprofit sector, and transform the support for rare disease community into an efficient, effective and long-term mechanism that solves the issues and challenges that this community encounters.
基金会介绍 (What is ICF)
The Beijing Illness Challenge Foundation (ICF) is the very first public welfare foundation in Beijing focusing on the field of rare diseases. ICF is devoted to solving urgent matters faced by the rare disease community through community services, nonprofit sector development, social advocacy, and eventually creating an equal and respectful environment for the community challenged by illness in the society. The Foundation is inspired by “the Ice Bucket Challenge” and founded on 29th February 2016, the International Rare Disease Day.
ICF is committed to support patient organizations that focus on medical treatment and rehabilitation as well as promoting policy and rights advocacy activities for rare diseases. It aims to establish platforms which involve participation from multiple actors and agencies, create signature projects that the public feel strong connections with, promote for a better social welfare coverage for rare diseases, and solve urgent matters faced by the rare disease community, including medical treatment and rehabilitation, education, employment, and social inclusion. The ultimate goal is to create a supportive and respectful environment for every person no matter what disease or challenge they have to suffer or face. Hence creating a fair, righteous, and inclusive society.
Vision: Create an equal and respectful social environment for the community challenged by illness.
Mission: Through developing communities, establishing platforms, and cooperating with multiple resources and actors to solve urgent matters faced by the rare disease community.
Slogan: Born to Challenge
工作内容 Working Projects
一、社群服务 Community Services
Issues related to rare disease are threatening humanity’s health and quality of life. Many families which are seeking medical help fall into desperate rock bottoms. ICF hopes to mobilize resources, with corporation from partner agencies, and to provide medical support and “Holistic Approach” assistance in order to improve patients’ quality of life.
Project 1: Rare Disease Medical Support Program
The medical expenses for rare diseases are usually extremely expensive and unaffordable for ordinary families. ICF and public foundation cooperatively initiated the first grass-roots “Rare Disease Medical Support Program” in China, striving to lessen the burden of medical expenses of rare disease community. This project shall begin on 28th February 2018, the 10th anniversary of the International Rare Disease Day. ICF anticipates encouraging enterprises, government and medical institutions to participate more enthusiastically in helping rare disease community via the project.
二、行业支持 Industry Support
ICF firmly believes that the rare decease patients are the key to unlocking and solving problems. Engaging in the complicated Chinese medical system and social environment, ICF respects and supports the subjectivity and voices of rare disease community and patient organizations.
ICF provides assistance and support in funding, capacity building, data and information management, and cutting-edge tools by coordinating with patient organizations, medical professionals and institutions, corporates, media, and other stakeholders. ICF aspires to collaborate with stakeholders step by step, so that an institutional support for the rare disease community would be created.
Project 1: Rare Disease Collaboration Platform
Rare disease collaboration platform targets on rare disease patient organizations to whom tailor-made assistance according to illness types and challenges is provided. For more than 70 rare disease patient organizations, this platform offers support in forms of small funding, resource channeling, capacity building, jointly declaring, and others.
三、社会倡导 Social Advocacy
Along with rare disease community, organizations, media, and partner institutions, ICF has engaged with the public in activities such as “the Ice Bucket Challenge” to advocate for rare disease patients. ICF also shares patients’ stories with the public via videos, illustrations and comics. Through regular survey studies on patients and motivating the patient community to speak out, ICF creates opportunities for the public to learn more about rare diseases and to see the real images of patients with rare diseases, so that misunderstandings, bias and prejudices toward them will be eliminated. Last but not least, ICF also aims to bring changes in policies and the social welfare system and to create an inclusive, equal and respectful social environment for all parties.
Project 1: “People born to challenge” Short-Documentary Series
Using stories to describe rareness, using images to record uniqueness. Working with the “XS Studio” who are also from the patient community, ICF releases a short documentary under the theme of “Born to make a difference” every month. The collection of “Born to make a difference” documentaries are distributed via “We media”, through which collaborations with a variety of old and new media are simultaneously realized. The series of short-documentaries shows the experience and insights of rare decease patients’ lives, hoping that the public would feel more deeply related to the patients. As of February 2019，22 short-documentaries are released online, and the total views have reached over 32 million.
Project 2: Rare Disease Science Popularization Program
ICF works with a genomic science popularization WeChat microblog, “Wonder Sir”, to tell a true story of a rare disease patient in the form of comics. There are two issues per month, allowing the public to learn about the unique life through fun comics while becoming more aware and understanding toward rare diseases. Readers can also show support by donating to public welfare projects. As of February 2019，There are 40 issues published online with millions of views in total. Moreover, this program has raised more than 1 million dollars for 8 rare disease public welfare projects.
联系方式 (Contact Us)
Official WeChat Account: 病痛挑战基金会
Official Sina Weibo: @病痛挑战基金会