病痛挑战基金会(The Illness Challenge Foundation)

基金会缘起 (History of the Foundation)

2014年夏天,由瓷娃娃罕见病关爱中心与新浪微博在中国发起的支持ALS等罕见病群体的“冰桶挑战”火爆全国,活动的热度只是一时,罕见病群体面临的“病痛挑战”却需各方长期努力推动解决。

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. 

罕见病,是指流行率很低、很少见的疾病,一般为慢性、严重性疾病,常危及生命。国际确认的罕见病有7000余种,约有80%是由于基因缺陷所导致的。罕见病绝大多数缺乏有效治疗方法,常常导致患者终身残障,甚至危及生命。罕见病病友在医疗康复、教育就业、社会融入等方面面临巨大困难,家庭因病致贫较普遍,制度保障严重缺失。

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)

北京病痛挑战公益基金会(简称病痛挑战基金会,英文缩写ICF)是北京市第一家关注罕见病领域的公益基金会,致力于通过社群服务、行业发展、社会倡导,共同解决罕见病群体面临的迫切问题,为面临病痛挑战的人士,建立平等、受尊重的社会环境。本基金会缘起于“冰桶挑战”,于2016年2月29日国际罕见病日正式宣告成立。

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致力于支持罕见病病友的医疗康复,培育积极行动的罕见病自组织,搭建多方参与的平台,打造公众链接感强的品牌项目,推进罕见病问题的制度保障,解决罕见病群体在医疗康复、教育就业、社会融入等方面的迫切问题使每一个生命个体无论身患何种疾病、面临何种不便,都能受到尊重与支持,共同实现公平正义、多元共融的美好社会。

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.

 

愿景:为面临病痛挑战的人士,建立平等、受尊重的社会环境。

Vision: Create an equal and respectful social environment for the community challenged by illness.

 

使命:通过发展社群、搭建平台、联动多方,共同解决罕见病群体面临的迫切问题。

Mission: Through developing communities, establishing platforms, and cooperating with multiple resources and actors to solve urgent matters faced by the rare disease community.

 

口号:生而不凡

Slogan: Born to Challenge

     

工作内容 Working Projects

一、社群服务 Community Services

罕见病问题严重威胁着全人类的生命健康和生活质量,让许多家庭在求医中陷入绝境。ICF希望充分调动社会资源,与伙伴机构协作,尽可能地为罕见病病友提供医疗援助和“全人康复”支持,提高病友的生存质量。

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.

 

项目:罕见病医疗援助工程

罕见病的医疗费用对普通家庭来说往往极其高昂、难以承受。ICF联合公募基金会,发起国内首个民间“罕见病医疗援助工程”,对中国罕见病群体进行医疗费用上的支持。该项目于2018年2月28日国际罕见病日十周年正式启动,希望通过民间公益行动撬动企业、政府、医院等多方参与。

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坚信,罕见病病友才是解决自身问题最有动力的存在。在中国复杂的医疗体系、社会环境内,我们始终尊重和支持罕见病社群和自组织的主体性及话语权。

ICF通过协同链接,针对病友组织及医学界、企业、媒体等相关方,提供包括资金、能力建设、数据信息管理、创新工具包等在内的协助和支持,希望协同各相关方形成合力,逐步推进罕见病群体的制度保障。

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.


项目:罕见病协作平台

罕见病协作平台针对罕见病自组织,按照不同疾病类型、问题挑战分组进行有针对性的支持,为70余家罕见病自组织,提供小额资助、资源通道、能力建设、联合发声等支持。

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

ICF联合各罕见病社群、组织及更多伙伴机构、媒体等,发起类似“冰桶挑战”的公众参与活动,以视频、图文、漫画等形式传播罕见病病友故事,定期开展罕见病调研报告等,推动罕见病群体向公众发声,让公众了解罕见病知识和病友的真实面貌,消除误解和偏见,推进政策制度保障,共同营造多元共融、平等尊重的社会环境。

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.

 

项目1:“生而不凡·人物志”系列短片

用故事诉说罕见,用影像记录不凡。ICF以“生而不凡”为主题,每月推出一部纪实短片,通过自媒体平台“生而不凡影像汇”与多方合作媒体传播,记录罕见病病友的生命经历与人生感悟,激发病友与公众的深度情感共鸣,还病友以尊严,给公众以力量。截至2019年2月,已上线22部作品,总阅读量逾3200万。

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.

 

项目2:罕见病暖心科普计划

ICF联合基因科普公益号“豌豆Sir”,每期以漫画形式讲述一位罕见病病友的暖心故事,附有相应罕见病的科普知识,每月两期,让公众通过趣味漫画感受不凡人生的同时,认知相应罕见病。如有条件,也可支持相应公益项目的筹款。截至2019年2月,已上线41期作品,总阅读量约数百万,为8个罕见病公益项目筹集善款逾百万。

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)

网站:www.chinaicf.org 

微信公众号:病痛挑战基金会

新浪微博:@病痛挑战基金会 

电话:4000408772

邮箱:bttz@chinaicf.org

地址:北京市朝阳区北京电影学院文创园(平房园区)星影空间3-115


Website: www.chinaicf.org

Official WeChat Account: 病痛挑战基金会

Official Sina Weibo: @病痛挑战基金会

Telephone: 4000408772

Email: bttz@chinaicf.org