基金会缘起 (History of the Foundation)
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)
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: 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.
Slogan: Born to Challenge
工作内容 Working Projects
一、社群服务 Community Services
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.
Project 1: Rare Disease Medical Support Program
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 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.
Project 1: Rare Disease Empowerment and Collaboration Platform
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.
Project 2：Rare Disease Symposium on Collaboration and Communication
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.
Project 3: Policy Advocacy
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 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.
Project 1: “People born to challenge” Short-Documentary Series
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.
Project 2: “People born to challenge” · Art to Voice Project
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.
Project 3: International Rare Disease Day Public Advocacy Program
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)
Official WeChat Account: 病痛挑战基金会
Official Sina Weibo: @病痛挑战基金会