Rare diseases pose a major threat to human being’s health and quality of life, leaving many families in desperate situation when seeking medical help. The ICF makes every endeavor to mobilize social resources to provide medical support and empowerment to the patients and their families so that they can improve their quality of life, explore their potentiality and have more equal opportunities in education, employment, and social inclusion.

Initiated by the ICF, this is the very first national grassroots charity fund for people with rare diseases (currently based on China’s First National List of Rare Diseases). 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 managing and analyzing the aided cases, The 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 June 2021, a total of 1,043 patients have received financial assistance from the program with a total of more than 14.32 million yuan allocated for their medical treatment and care, covering 29 provinces across the country and 61 types of rare diseases. At the same time, to help patients complete the last mile of their long journey to achieving medical affordability and to explore a multi-level protection mechanism for rare disease patients, a special local project fund has been established to provide supplementary reimbursement for patients above their local medical insurance for rare disease care.

Through the establishment of medical social work service stations in hospitals, The ICF’s professional medical social workers assist patients with their medical treatment, follow-up visits, reimbursement, and disease management. Moreover, the ICF continues to provide patients with psychological support hotlines, education scholarships, employment trainings and opportunities to respond to their needs. As of the end of June 2021, over 30,000 patients have been benefited from this program.

We firmly believe that rare disease patients are the key to solve their own problems by themselves, but not alone. Working in collaboration with other organizations, medical professionals and institutions, enterprises, and the media, the ICF provides support to patient organizations, creates communication platforms, speaks out against injustice, and advocates for policy changes. By working closely with all relevant parties and stakeholders, the ICF hopes to gradually secure the institutional support on social and medical welfare for the rare disease community.

Years of experience teach us 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, public speaking training camp, etc. Through these diverse empowerment programs, the platform intends to significantly enhance the autonomy of the patients and the patient organizations, to motivate them to actively seek solutions for their own problems and to fully explore their own potentialities, to nurture and energize future community leaders, and to help them grow into the backbones of the rare disease community.

In collaboration with relevant parties and stakeholders, the ICF provides pertinent services to support more than 100 rare disease organizations. These services are tailored to the type and seriousness of the diseases and the specific problems the organizations have encountered, which include information management, patient services, publicity activities, and policy advocacy. The goal of the organization support program is also to help the rare disease organizations improve their service quality and efficiency and form integrative partnership on policy advocacy. Meanwhile, a training course and funding support system have been established. The First Public Interest Innovation Competition for Rare Disease Patient Organizations was held in 2020 supporting 15 patient organizations implementing their innovative projects. In 2021 and onwards we will continuously upgrade this project and support patient organizations to find solutions beyond medications.

Every year, the ICF hosts the Rare Disease Symposium on Collaboration and Communication in China (the Symposium). Under the guidance of the China Alliance for Rare Diseases, the Symposium promotes the engagements between the patient organizations and other stakeholders, including doctors, hospitals, enterprises, the government, 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 improving health and social welfare for people affected by rare diseases. In 2019 and 2020, the Symposium was attended by more than 2.7 million participants in person and online, and received more than 300 media reports.

The ICF maintains long-term collaborative relationship with key stakeholders of rare diseases through timely communication, active engagement, and jointly speaking up for rare disease communities. Our years of experience in serving rare disease patients and their families allow us to see and analyze problems from the patients’ perspectives and to provide suggestions and solutions centered on the patients’ needs. The ICF conducts independent patient experience and outcome research, identifying current living status of rare disease patients and their families. It also publishes research reports and policy briefs, disseminates policy recommendations through research seminars and industrial media, and advocates policy changes via public health campaigns.

The ICF works closely with rare disease communities, relevant organizations, the mass media, and partner institutions to initiate campaigns for public participation, including the “Ice Bucket Challenge” in China. The ICF also constantly shares the stories of the rare disease patients in forms of videos, photos, texts, and comics. By doing so, the ICF endeavors to raise the public awareness of rare diseases, to help the public better understand the real lives of the patients, to eliminate the prejudice and discrimination, and to create an inclusive, equal and respectful social environment.

Rare stories, extraordinary documentaries The ICF produces a series of biographical documentaries under the theme of “Born to Challenge.” The documentaries show the life experience and insights of rare disease patients and their families, educating the public to know and empathize with them. Up to the end of August 2019, 24 short documentaries were released online, and the total number of viewers had reached over 34 million. The ICF also works with the “Wonder Sir”, a popular science education WeMedia on genetics and genomics, to tell true stories of rare disease patients in the form of comics. By publishing two stories per month, the project allows 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 related fundraising projects initiated by the patients or their organizations. Up to the end of August 2019, 40 stories were published online with millions of pageviews in total and more than one million in donations raised.

For many years, the 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 “Born to Challenge, Art as 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 as Voice” project includes but is not limited to: the 8772 band, public speaking training camp, the art creation workshop, and the symbiosis dance workshop. 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. Outputs 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.

On the International Rare Disease Day and specific rare disease awareness day, the 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 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 programs 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.