HoFH/FCS Patient Advocacy Workshop Successfully Concludes in Beijing 【Group Discussion】——Focusing on
On September 18-19, 2026, the "2026 China HoFH Patient Survival Status Survey Report Release Conference and HoFH/FCS Patient Advocacy Workshop," hosted by Hongmili Mutual Aid Home, was successfully held in Beijing.
On the afternoon of September 19, we entered the group discussion session of the workshop,shifting the focus to the real-world issues of greatest concern to patients—drug accessibility, medical insurance admission, community building, and psychological support.
Before the formal discussion began, patients sat together in a circle, introducing themselves one by one and sharing the small wishes hidden in their hearts—some hoped their children could smoothly obtain special outpatient coverage, some looked forward to new drugs entering medical insurance soon, and others wanted to find more patients who "understand me"...
A few simple self-introductions brought warmth to faces that were still somewhat unfamiliar. When everyone discovered that they shared similar anxieties and similar expectations, the sense of distance quietly melted away, and trust and resonance gradually began to flow within the circle.
Carrying this newly established connection, the discussion officially kicked off.
Patient families from across the country were divided into four groups, engaging in lively discussions around their most urgent needs.
From the discussions, we heard everyone's most genuine difficulties and demands,mainly concentrated in three areas: medication, payment, and psychology.
Everyone hopes that more effective new lipid-lowering drugs can be launched in China as soon as possible,and also hopes that pediatric indications can be expanded at the earliest opportunity—so that every patient, every child, can wait for the medication that belongs to them.
The launch of new drugs is only the first step; what concerns everyone more is drug security:they hope new drugs can quickly enter medical insurance and supplemental insurance (Huimin Bao), and also hope that hyperlipidemia (such as HoFH, FCS, etc.) can be included in the management of special chronic outpatient diseases—so that treatment no longer becomes a burden that crushes families.
Because the diseases are rare, many patients have encountered misunderstanding and prejudice, and have endured loneliness and anxiety.What everyone needs is not just medication, but also psychological support that is understood and accepted—so that every rare disease patient can cast off the heavy burden of the mind and move forward light.
Three wishes, simple yet weighty: having accessible medication, affording the medication, and living with ease. These are not only the voices of patients, but also the direction in which Hongmili Mutual Aid Home will continue to move forward.
During the discussions, each group also developed targeted action plans. These plans are not slogans left on paper, but feasible paths that patients have carefully mapped out step by step based on their own circumstances—from policy advocacy to community co-building, from medical insurance admission to psychological support. Behind every action lies a shared aspiration of a group of people for a "better life."
At the end of the event, Chen Nazhen, founder of Hongmili Mutual Aid Home, reviewed the organization's journey of action over the past six years since its establishment:
Discovered high blood lipids and began medication;
Diagnosed with heterozygous familial hypercholesterolemia (HeFH);
Attended the Spring Capacity Building Conference held by the Kunde Rare Disease Center and realized the power of patient organizations;
The Hongmili patient organization was officially established;
Witnessed the passing of a fellow patient and deeply understood the urgency that homozygous patients "cannot afford to wait for medication," shifting focus to the homozygous patient community;
Attended the European FH Annual Meeting;
Co-launched a research fund with the Ruiou Charity Foundation, held the first patient conference, and joined the Global Heart Alliance;
Released the "2026 China HoFH Patient Survival Status Survey Report," receiving support from international and domestic experts.
Chen Nazhen candidly shared her true psychological journey: "I was not resolute from the very beginning. After going to Europe in 2024, I suffered from insomnia and anxiety, but I still continued to travel abroad for conferences to build connections. A patient organization needs someone to act on behalf of the community."
Finally, Chen Nazhen summarized her reflections from six years since the founding of Hongmili:
As we kept walking, the people around us grew more—from one person to a group of people, from fighting alone to walking side by side. The road is still difficult, but because we are no longer alone, we have become even more determined.
With this, the "2026 China HoFH Patient Survival Status Survey Report Release Conference and HoFH/FCS Patient Advocacy Workshop" has officially come to a successful conclusion.
Though the two-day gathering was brief, what we gained was not only data and plans, but also the trust and companionship of a group of people. Hongmili Mutual Aid Home will continue to stand side by side with patients, so that we can be seen and love can be within reach.
We look forward to our next gathering.
Acknowledgments:
Thank you to the co-organizer: Disease Challenge Foundation
Thank you to the sponsor: Chiesi Pharmaceutical (Shanghai) Co., Ltd.
Photography and videography: Ding Qin
Writer: Hongmili Mutual Aid Home Song Yun
Proofreader: Hongmili Mutual Aid Home Chen Nazhen, Wang Yani
Editor: Yuan Meng
