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

基金会缘起 (History of the Foundation)

罕见病,一般指发病率低、患病人数少的疾病,约有近8,000种,在中国约有数千万人受其影响。2018年5月,中国卫健委等五部门联合出台《第一批罕见病目录》,收录121种罕见病,并表示将继续扩大这一目录。绝大多数罕见病无法治愈,罕见病病友在医疗康复、社会融入等方面遭遇诸多挑战,确诊难、用药难,常常遇到误解或歧视,制度保障严重缺失。

Rare diseases generally refer to diseases with low prevalence and few patients. There are nearly 8,000 different types of rare diseases, affecting tens of millions of people in China. In May 2018, National Health Commission of the People’s Republic of China and other five ministries and administrations jointly issued The First Catalogue of Rare Diseases in China, which included 121 varieties of rare diseases. It is indicated that this catalogue will be expanded continuously. The vast majority of rare diseases cannot be cured. Patients with rare diseases face enormous challenges in many aspects of their daily life, including medical care and rehabilitation, as well as social inclusion. Challenges are also faced in the aspects of diagnosis and medical treatment, often encountered misunderstanding and discrimination, and the serious lack of institutional protection.

 2014年夏天,瓷娃娃罕见病关爱中心与新浪微博将火爆全球的“冰桶挑战”落地中国,倡导公众支持ALS等罕见病群体。为了社会各界能够持续关注和支持国内各类罕见病群体,瓷娃娃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)。本基金会希望整合社会资源,搭建更大的平台,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 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 Lateral Sclerosis (ALS) and other rare diseases. In furtherance of the sustained attention and vigorous support from the society, the China-Dolls Center for Rare Disorders and the Narada Foundation jointly founded the Illness 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.


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:以发展赋能社群为核心,通过搭建平台、联动多方,共同解决罕见病群体面临的迫切问题。

Mission: By focusing on the development and empowerment of communities, through 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,病友孤独无助。ICF希望充分调动社会资源,尽可能地为罕见病病友提供医疗援助与赋能支持,提高病友的生存质量,发掘病友潜能,支持病友的社会融入。

The rare diseases pose a major threat to human being’s health and quality of life, leaving many families in desperate situation in seeking medical help. ICF makes every endeavor to mobilize social resources to provide medical aid and empowerment support to the rare disease patients, so as to improve their quality of life, explore their potential and to support their social inclusion.


项目1:罕见病医疗援助工程

Project 1: Rare Disease Medical Support Program

本项目是ICF发起的首个全国性、全面覆盖罕见病病种(目前以中国官方《第一批罕见病目录》为准)的民间公益援助基金,针对罕见病群体提供医疗资源转介、各地医保信息、最新药物进展、个案资金援助的全方位支持。ICF通过援助数据累积及分析,联合政府、企业、医院探索罕见病就医多方支付模式及医院医生协作通道,推动罕见病群体求医难、用药难、支付难等问题的解决。截至2019年8月末,项目受益家庭782个,受益人数逾2,346人。

Founded by ICF, this is the very first national grassroots charity fund for people with rare diseases (currently based on The First Catalogue of Rare Diseases in China ). It provides comprehensive support for rare disease patients, including medical referral resources, information about local medical insurances, the latest progress on pharmaceutical development, and financial aids to individuals. Through data accumulation and analysis of aided cases, ICF has jointly collaborated with the government, enterprises, and hospitals to explore the multi-party payment model for rare diseases, to create collaborative channels between the patients and the doctors, and to remove barriers to timely diagnosis, treatment, and payment for rare disease patients. As of the end of August 2019, there were 782 beneficiary households with more than 2,346 beneficiaries.

 

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,但只有病友的努力是不够的。ICF通过协同链接,针对病友组织及医学界、政府、企业、媒体等相关方,开展病友组织支持、搭建交流平台、联合发声、政策推动等工作,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 disease patients are the key to solve their own problems, but not by themselves alone. Working in collaboration with patient organizations, medical professionals and institutions, enterprises and the media, ICF provides supports to patient organizations, creates communication platforms, jointly speak out against injustice, and advocates for favorable policies. By cooperating with all relevant parties and stakeholders, ICF hopes to gradually institutionalize social and medical security for the rare disease community. 


项目1:罕见病赋能协作平台

Project 1: Rare Disease Empowerment and Collaboration Platform

ICF在多年社群支持工作中,看到赋能赋权的工作方法对病友们有着不可替代的作用。2012年开创本项目,如ICAN罕见病协力营、演讲特训营等。希望通过丰富多元的形式,充分调动病友和病友组织解决问题的主观能动性,培育积极社群骨干,支持其成为组织领导人。

基于社群骨干培育,ICF联合各界力量,按不同疾病的情况、问题,分组、分阶段有针对性地支持超过100家罕见病病友组织开展信息管理、病友服务、公众宣传、政策倡导等工作,提升病友组织对病友群体的服务质量和成效,开展联合发声行动。

Based on years of experience, ICF finds that empowerment plays an irreplaceable role in changing the lives of patients. The Rare Disease Empowerment and Collaboration Platform was launched in 2012, incorporating programs such as the I CAN Camp and the speech training camp, etc. Through these diverse empowerment programs, the platform intends to substantially enhance the agency and motivation of the patients and patient organizations to find solutions to their own problems, to fully explore their own potentials, to cultivate the backbones of the rare disease community, and to support them to grow and to become leaders

In collaboration with relevant parties and stakeholders, ICF provides pertinent services to support more than 100 rare disease organizations based on the type and seriousness of the diseases and the specific problems they encountered. The services including information management, patient services, publicity activities, and policy advocacy. By doing so, the service quality and efficiency of the patient organizations have been improved, and joint efforts have been formed in launching publicity campaign.


 项目2:罕见病合作交流会

Project 2:Rare Disease Symposium on Collaboration and Communication

ICF通过发起每年一届的罕见病合作交流会,在中国罕见病联盟的指导下,促进病友组织与医生、医院、企业、政府、媒体等相关方的沟通交流,解决罕见病问题,宣传罕见病知识,提高罕见病防治水平,推动罕见病科学研究,提高罕见病社会保障水平。首届罕见病合作交流会已于2019年7月成功举办,国家卫健委、罕见病诊疗与保障专家委员会办公室等政府有关部门就罕见病目录制定标准等议题与病友组织进行交流对话,共计600余人参与探讨罕见病问题解决方案,其中病友及病友组织200余人、医生学者100余人。

Every year, ICF hosts the Rare Disease Symposium on Collaboration and Communication in China. Under the guidance of the China Rare Disease Alliance, the symposium promotes the engagements between the patient organizations and other stakeholders, including doctors, hospitals, enterprises, governments, and the media. It also endeavors to find solutions for issues related to rare diseases, such as promoting public awareness and knowledge, improving the status of disease prevention and treatment, advancing research, and calling on raising the level of social security for people affected by rare diseases. The first Rare Disease Symposium on Collaboration and Communication was successfully held in July 2019. Officials from the National Health Commission, the Office of the Expert Committee on Rare Diseases Diagnosis, Treatment and Medical Security, and other government departments exchanged thoughts and ideas with patient organizations on topics such as establishing standards for the rare disease national list. The first symposium was attended by more than 600 guests, including more than 200 rare disease patients and representatives from patient organizations, and more than 100 doctors and scholars.


项目3:政策推动

Project 3: Policy Advocacy

ICF与罕见病领域的各相关方长期沟通、积极互动、共同发声,通过定期开展调研报告、举办研讨会、培训病友与组织赋能、面向医生和公众多渠道普及罕见病知识等方式,引导各界对罕见病问题的重视,推动各项罕见病群体保障政策的出台。

ICF maintains long-term cooperative relationship with relevant parties of rare diseases based on mutual understanding, active collaboration and shared goals. Through periodic research reports, seminars, patient training, organization empowerment and publicity campaign towards medical professionals and the public, ICF successfully raised the public awareness of the rare diseases and pushed for the introduction of various protection policies for the rare diseases communities. 


三、社会倡导 Social Advocacy

ICF联合罕见病社群、组织、媒体、伙伴机构等,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,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,共同营造多元共融、平等尊重的社会环境。

ICF works closely with rare disease communities, relevant organizations, mass media, and partner institutions to initiate campaigns for public participation, like the “Ice Bucket Challenge” in China. ICF also constantly share the life stories of the rare disease patients in forms of video, text with images and comics. By doing so, ICF endeavors to raise the public awareness of the rare diseases, to deepen common people’s understanding of the real living situation of the patients, and therefore, to eliminate the misunderstanding and prejudice, and to create an inclusive, equal and respectful social environment.


项目1:“生而不凡·人物志”

Project 1: “People born to challenge” Short-Documentary Series

用故事诉说罕见,用记录呈现不凡。

ICF以“生而不凡”为主题,推出系列纪实短片,记录罕见病病友的生命经历与人生感悟。通过自媒体平台“生而不凡影像汇”,ICF与多方合作媒体传播,激发公众与病友的深度情感共鸣,还病友以尊严,给公众以力量。截至2019年8月,已上线24部作品,总阅读量逾3400万。

ICF联合基因科普公益号“豌豆Sir”,每期以漫画形式讲述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。截至2019年8月,已上线40余期作品,总阅读量约数百万,为多个罕见病公益项目筹集善款逾百万。

Rare stories, extraordinary documentaries

ICF releases a series of documentaries under the theme of “Born to challenge”. The series of short documentaries showed the life experience and insights of rare disease patients. They aroused the empathy in the public towards rare disease patients. Up to the end of August 2019, 24 short documentaries have been released online, and the total number of pageview has reached over 34 million.

ICF works with the “Wonder Sir”, a genomic science popularization public account on WeChat, to tell true stories of rare disease patients in the form of comics. There are two posts per month, allowing the public to learn about the unique life of patients through fun comics while becoming more aware of rare diseases. Readers can also show their support by donating to the related fundraising projects. Up to the end of August 2019, 40 posts have been published online with millions of pageviews in total, and more than a millions RMB has been raised for many rare disease fundraising projects.


项目2: 生而不凡·艺术发声计划

Project 2: “People born to challenge” · Art to Voice Project

ICF在多年工作中,看到艺术对病友的改变有着不可替代的作用,同时艺术也是最具包容性链接社会公众的方式。“生而不凡·艺术发声”计划,通过艺术互动的形式,多元呈现罕见病群体的真实现状,倡导公众关注罕见病群体面临的迫切问题。

艺术发声计划包括但不限于:8772乐队、演讲特训营、艺术创作工作坊、共生舞工作坊等,以丰富多元的艺术形式,充分调动病友和病友组织的积极性和潜能,并通过所产出的音乐、舞蹈、舞台剧、演讲等公共艺术作品,进行生命教育,深度链接公众。

For many years, ICF has seen that art plays an irreplaceable role in reshaping the patients. Art is also the most enabling way to click with the public. The “People born to challenge · Art to Voice” project adopts the form of artistic interactions to represent the real conditions of rare disease community and to promote public attentions to the urgent problems faced by the community.

The “Art to Voice” project includes but is not limited to: the 8772 band, speech training camp, art creation workshop, symbiosis dance workshop, etc. By involving rare disease patients and patient organizations in a diverse form of arts, all these programs are trying to fully mobilize their enthusiasm and potentiality. Products of these programs, such as music, dance, stage plays, and speeches, are used to carry out life education and to deeply click with the public.

 

项目3:国际罕见病日公众倡导计划

Project 3: International Rare Disease Day Public Advocacy Program

每年2月的最后一天为国际罕见病日。 ICF在国际罕见病日前后联合各罕见病病友组织、政府、医院、媒体、公众进行线上线下一系列倡导和互动参与活动,如罕见病调研报告发布、研讨会、罕见病线下科普倡导、影展、纪录片展、大型融合艺术节、线上互动传播等。旨在呼吁社会各界了解、关注、支持罕见病,共同创造对罕见病群体友好的社会环境和支持体系。

The last day of February is the International Rare Disease Day. Every year, on this particular day, ICF initiates a series of online and offline advocacy programs in conjunction with rare disease patient organizations, the government, hospitals, the media, and the public. These programs include releasing findings from a biannual national survey on the living conditions of people affected by rare diseases, organizing academic research seminars, popularizing science to the public, hosting film festivals, photo and documentary exhibitions, and large-scale fusion art festivals, and fostering online engagements, etc. The aims of the program are to call on the whole society to understand, pay attention to and support people affected by rare diseases and to jointly create a friendly social environment and support system for the rare disease community.

 

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