Five Innovations Focus on the Rare: 2021 Rare Disease Collaboration Forum Opens for Registration

The 3rd Rare Disease Collaboration and Exchange Conference in 2021, initiated by the Pain Challenge Foundation and guided by the Chinese Alliance for Rare Diseases, was themed “Healthy China: No One Left Behind,”From the perspectives of “payment innovation,” “technological innovation,” “service innovation,” “pharmaceutical innovation,” and “patient role innovation,”Facilitate communication among patients with rare diseases, patient organizations, and relevant stakeholders—including governments, physicians, hospitals, research institutions, policy think tanks, enterprises, and media—to drive solutions for rare disease challenges.

"In recent years, with the introduction of a series of supportive policies, the field of rare diseases has entered a fast lane of development in terms of drug R&D and market approval, diagnosis and treatment systems, payment guarantees, and comprehensive patient services,"“Rare diseases” are becoming a “hot” topic in the healthcare industry, which precisely calls for “cool-headed” reflection from practitioners.

At the opening ceremony, distinguished guests including Wei Yingning, former Vice Chairman of the China Insurance Regulatory Commission (CIRC) and former Deputy Director of the Insurance Department of the People’s Bank of China; Zhang Shuyang, President of Peking Union Medical College Hospital; Li Linkang, Executive Chairman of the Chinese Alliance for Rare Diseases; Wang Chenguang, Professor at Tsinghua University Law School and Director of the Health Law Research Center; Wang Yi’ou, Founder of the Beijing Pain Challenge Public Welfare Foundation; Shi Luwen, Director of the International Research Center for Pharmaceutical Management at Peking University; and Shan Guohong, President of Takeda China, will focus on patient needs, summarize practical experiences, and discuss innovative development trends from the perspectives of legislation, policy, healthcare coverage, diagnosis and treatment, patient engagement, and drug research and development.

At the roundtable discussion, chairs of the Rare Disease Branches of medical associations from multiple provinces convened to share their local experiences in building rare disease diagnosis and treatment systems. Experts who have long focused on rare disease coverage will discuss drug accessibility, as well as practical implementation experiences and future prospects for multi-stakeholder participation in payment guarantees.For the detailed agenda of the opening ceremony and the conference, please refer to the end of this document.

The conference distilled five developmental dimensions in the current rare disease field, which also serve as five keys to addressing rare disease challenges—“payment innovation, drug innovation, service innovation, patient role innovation, and technological innovation.” By bringing together diverse stakeholders for dialogue, these efforts are propelling the rare disease sector into a new phase of development.

So, what doors of hope will these five keys unlock? And which guests will attend this conference to engage in discussions?

Medical security remains one of the most central issues in the field of rare diseases. In recent years, the range of protections available to patients has become increasingly diverse. Beyond basic medical insurance reimbursement, various forces—including regional policies, charitable assistance, and commercial insurance—are actively exploring new avenues. Meanwhile, the emergence of “Huimin Bao,” a type of inclusive supplementary medical insurance, in many regions also provides a certain level of coverage for the majority of the rare disease population.

The “Payment Innovation” section of this conference features two forums, which willA Comprehensive Review and Analysis of All Current Coverage Mechanisms for Rare Diseases in ChinaIncluding interpretation of national policies and exploration of how public welfare platforms, corporate forces, grassroots charitable organizations, commercial insurance, and inclusive insurance can participate in rare disease coverage.

At the forum, the Illness Challenge Foundation will releaseChina's First Research Report Consolidating Information on Over 100 Local "Hui Min Bao" ProgramsAn In-Depth Analysis of the Current Status and Prospects of This Type of Insurance in Rare Disease Coverage.

If the “Payment Innovation” session of the conference focuses on the present, the “Technological Innovation” session looks to the future, featuring roadshows toShowcasing a series of “cutting-edge technologies” that support patients with rare diseases, ranging from small tools to large-scale systems,Painting a Vision of a Brighter, More Convenient Future for Patients.

In April this year, the world’s first rare disease technology innovation platform, “Inno4Rare (Innovation for Rare Diseases),” was jointly launched by the Pain Challenge Foundation, Plug and Play China, and Zi’ang Health, a subsidiary of Langyu Group. The platform aims to investigate and map out the pain points of patients, while bringing together scientific and innovative resources from universities, enterprises, and other stakeholders.Medical assistive devices, digital healthcare, and drug R&D enablement,Solution launch and roadshow at this year’s conference—stay tuned!

Improving the quality of life for patients with rare diseases hinges on “services.” This entails not only providing treatment but also delivering comprehensive, patient-centered support across the entire lifecycle—from health management, diagnostic and treatment workflows, psychological support, and daily living assistance to genetic counseling. These are precisely the topics to be explored in the “Service Innovation” section of this conference.

In recent years,"Medical Social Worker"the concept is gradually being implemented, with participating guests sharing practical experience and development recommendations; representatives from the Boao Lecheng International Medical Tourism Pilot Zone Administration will address the accessibility of rare disease medications"The Lecheng Experience"; as the application of “Internet” + “Healthcare” becomes increasingly prevalent, the conference will bring togetherJD.com, Tencent, Alibaba, and other internet healthcare platformsrepresentatives, engage in extensive exchanges; the conference will also bring insights onGenetic Diagnosis, Screening and Prevention, and Clinical Management Services for Rare Diseasescutting-edge insights and exclusive analyses in these areas.

We often say that the aspiration of patients with rare diseases is “access to medicines for their conditions, and insurance coverage for those medicines.” The latter emphasizes payment security, while the former focuses on drug development. Moreover, addressing payment security fundamentally requires expanding funding sources (“opening up revenue streams”), as cost containment (“throttling expenditures”) alone is insufficient.

Encouragingly, locally innovated drugs for rare diseases are moving from vision to reality. So, how can domestic pharmaceuticals achieve a turnaround? The conference willPolicy Environment, Clinical Research, Local Experience, Patient Organization Engagementand other aspects, focusing on"Patient-Centered"philosophy, fully demonstrating the potential of this pathway. We anticipate that, following the systematic review presented in the “Drug Innovation” segment of this conference, when rare disease patients face a situation of “no available treatments,” all stakeholders—from patient communities to physicians and other relevant parties—will recognize the specific areas where efforts can be directed, rather than feeling helpless.

As favorable policies for rare diseases continue to be introduced in areas such as healthcare and insurance coverage, how patients with rare diseases can more proactively and rationally contribute to the formulation of relevant public policies has become a growing concern among patient communities and other stakeholders.

The “Patient Value Innovation” session of the conference will invite multiple experts,Introduce the latest policy developments, provide recommendations centered on public policy advocacy and patient engagement pathways, and encourage patient communities and relevant stakeholders to continuously contribute to the discussion and formulation of public policies.

Healthy China: No One Left Behind

The 3rd Rare Disease Collaboration and Exchange Conference

You Are Cordially Invited

Official Conference Website (http://rdforum.chinaicf.org) will present the latest conference updates, rare disease information, partner showcases, and more. It will be continuously updated and will feature a live streaming portal for the conference. Please long-press and scan the QR code below to save and browse.

We extend our gratitude to the numerous rare disease organizations and supporting institutions for their communication support of this conference. The following joint communication partners are listed in no particular order; scroll down to view the complete list, which is being continuously updated: