Hongmili grains finalist for 2026 Global Excellence Awards

In October 2026, Hongmili China Lipid Patient Network was shortlisted for the 2026 Global Heart Hub Unite Summit Global Excellence Award!

Homy FH China Patient Network

Title of the Project/ Initiative:

Patient-Driven HoFH Registry in China:From Data Collection to Advocacy and Clinical Action

Central Aim of the Project:

To establish China's first systematic HoFH registry, continuously collecting patient-reported data acrossclinical profiles, financial burden, and psychosocial dimensions - with longitudinal follow-up -- togenerate real-world evidence for policy advocacy, research, and improved patient care.

Description of the Project and its lmplementation:

We developed an independent, patient reported registry for HeFH and HoFH. More than 20 patientrepresentatives took part in multiple rounds of beta-testing during the development of the registry system.When the system launched from August 2025,122 HoFH patients and caregivers volunteered de-identified real-world data covering clinical profiles, financial burden and psychosocial status in thefollowing 9 months. Our patient organisation partnered with clinical experts, who provided methodologicaland medical advisory support. Jointly we performed data analysis and produced the 2026 Report onLiving Conditions of Chinese HoFH Patients.

The reaistry underpins multiple activities: real-world evidence-based patient advocacy, one-on-oneclinical-trial matching, and community capacity building. Patients have been actively involved across beta-testing, data submission, the report launch and advocacy workshops. By combining lived patientexperience with clinical expertise, this patient driven initiative generates locally rooted evidence to informresearch, clinical practice and policy work for HoFH in China.

Impact, Measurement and Results:

This patient-led project has generated clinical, academic, policy, and social impacts beyond real-worlddata colection. We will launch the 2026 Report on Living Conditions of Chinese HoFH Patients in Beiingon September 18, gathering cardiologists, rare disease scholars, media, patient representatives, andpolicy researchers to disseminate first national evidence on HoFH barriers and unmet needs. A patientadvocacy workshop on September 19 will empower patient leaders with policy engagement skills. Tostrengthen academic influence, we are preparing peer-reviewed manuscripts from registry data to shareChina's HoFH real-world evidence internationally. For systemic change, we are establishing provincialadvocacy groups to promote better diagnosis pathways, medication access, and insurance protection.bridging gaps among clinicians, policymakers, and industry. We are also translating report findings intosocial media science materials to raise awareness and reduce stigma.

Key Learnings and Takeaways:

Patient-led real-world research effectively bridges the gap between rare disease patients and institutionalstakeholders. Standardized data collection, expert collaboration and systematic advocacy training arecore to driving actionable clinical and policy improvements for underrepresented rare disease groups.Importantly, transparent data feedback to patients builds trust and sustains participation. Earlyengagement with policymakers and clinicians ensures findings are relevant and adopted.

Recommendations and Implications for the Future:

We will sustain long-term registry follow-up with annual data updates, scale provincial advocacy teams.and publish peer-reviewed papers. Based on this experience, we aim to develop a replicable patient-learegistry toolkit for other cardiovascular diseases or other rare dyslipidemia and translate evidence intonational diagnosis and insurance policy upgrades.

Also shortlisted alongside Hongmili China Lipid Patient Network are patient organizations from the United Kingdom, the United States, and Hungary.

We represent the Chinese FH community, bringing the "Patient-Driven HoFH Registry Project" to the international stage, showcasing the true power of rare disease patients in China as they move from "data collection" to "advocacy and clinical action."