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Hongmili China Lipid Patient Network- September 2026 Monthly Work Report
2026-10-29 15:36 Hongmili China Lipid Patient Network
1. Launched China's first survival report for HoFH patients: Completed the finalization and printing of the "Survey Report on the Survival Status of Patients with Homozygous Familial Hypercholesterolemia (HoFH) in China (2026)" and held a press conference in Beijing on September 18.
2. Organizing events HoFH/ FCS Patient Advocacy Workshop: Held in Beijing on 19 September； 47 people participated； through group discussions, participants identified patients’ core needs and defined future action directions.
3. Public dissemination of FH Awareness Day and World Heart Day: Around Global FH Aware Day on September 24 and World Heart Days on September 29, international advocacy resources are compiled and reposted, and a series of science popularization content is released to raise awareness of genetic lipid abnormalities in society.
Since the “hongmili Patient Registry System” was officially launched in August 2025, it has continued to operate consistently for HoFH and HeFH。Adult and child patients are registered.This project will continue over the long term and aims to understand the current status of China’s FH population and to support real‑world research from a patient’s perspective.
In September 2026 new registrations were added for 5 people, namely:
As of September 30, 2026:
The cumulative total was completed
135 individuals have completed registration.
Among them,
Children 58 people,
Adults 77 people.
Completed
82 individuals have completed registration
Among them,
Children 18 people；
Adults 64 people.
Earlier this month, we conducted several rounds of pre‑print proofreading for our report titled “Survival Status of Chinese Patients with Homozygous Familial Hypercholesterolemia （HoFH） （2026）”； we identified issues, made electronic revisions, and, once the final version was finalized, officially printed the complete report.
The event brought together 12 guests, 13 representatives from four companies, and 17 HoFH patients/patient relatives； the successful holding of the press conference signified that this important research finding had now been officially made public to the community.
The launch event for the "2026 China HoFH Patient Survival Status Survey Report" was successfully held in Beijing!
Official accounts of WeChat, Little Red Book, Douyin and others
20 people
11 people
30 minutes
10 people
5 people
As of October 8, 2026, the community had gained a total of 22 new patients. The number of users served by each platform’s community services is shown in the table below:
| platform | Number of new arrivals this month | cumulative number of people |
|---|---|---|
| Number of people in the community | ||
| total | 22 | 2905 |
| Number of registrants | ||
| Number of followers of self-media accounts | ||
| total | 113 | 9300 |
☑Item 1: International Exchange - Participate in the quarterly meeting of the GHH Women's Heart Working Group
Najin Chen attends the quarterly meeting of the Global Heart Hub (GHH) Women & Heart Network on September 3. The meeting focused on reflections from the Amsterdam Patient Network Conference and the Community and Industry Round Table, the five core priorities of the Women and Heart Network in the Unite Action Agenda, and the workshop on the establishment of the WHO Women's Cardiovascular Health Alliance. By participating in this conference, we gained deeper insights into the latest developments in global advocacy for women's cardiovascular health and accumulated international experience to advance related initiatives in China moving forward.
☑Business cooperation - communication with HoFH new drug progress and cooperation plan
On 18 September, hongmili Seeds and Hengrui Medicine’s working team held discussions； the two parties shared the latest information on the HoFH drug candidate and conducted initial talks about future collaboration plans.
☑Item 3: Enterprise Cooperation - Discuss HoFH Blood Lipid Purification Promotion and Education Cooperation with Asahi Kasei
On 28 September, Chen Nazhen and Asahi Kasei staff held an online discussion and made initial exchanges on future efforts to improve access to lipid‑clearance therapy for HoFH patients, as well as on physician and patient education。The two parties explored the possibility of collaborating in the field of lipid purification – including physician training and patient education workshops – in order to help more HoFH patients access standardized, affordable lipid purification therapies .
September 24 Global FH Awareness Day
September 24 of each year is designated as FH Awareness Day； this day was established by the International FH Foundation in 2012 with the goal of raising global awareness about familial hypercholesterolemia （FH）.
During the FH Awareness Day, the European FH Foundation Club released a series of posters. We sorted them out, and actively shared them, and helped promote the promotion!
9.29 World Heart Day
World Heart Day was established in 1999 by the World Heart Federation and supported by the World Health Organization (WHO). Its core purpose is to raise global public awareness of the "number one killer" of cardiovascular disease and to promote healthy lifestyles to prevent the disease. World Heart Day | Three "invisible killers" in the blood.
On 19 September 2026, the Hongmili China Lipid Patient Network successfully held a HoFH/FCS patient advocacy workshop in Beijing （this event was sponsored by A total of 37 people took part in this event: 22 were patients or patients’ family members, 6 were guests, and 9 were staff members； it was an event focused on policy advocacy and community empowerment discussions within the patient community. The event was attended by a total of 37 participants, including 22 patients and their family members, 6 guests, and 9 staff members. It was an internal exchange focused on policy advocacy and community empowerment for patients.
Focus on rare dyslipidemia, build patient support network - HoFH / FCS patient advocacy workshop successfully held in Beijing
The workshop featured group discussions on topics of greatest concern to patients with HoFH/FCS. This includes promoting the inclusion of HoFH/FCS‑related treatments in health insurance coverage, expanding the influence of patient communities, encouraging pharmaceutical companies to conduct research on rare lipid metabolism disorders, and facilitating the implementation of outpatient policies for chronic and special diseases 。During the exchange, the groups combed through issues, shared experiences and reported on the outcome of the discussions on site.The event also invited Ms. Xing Huanping, executive director of an SMA patients’ organization, to share her experiences in policy advocacy and media communication, helping patients and their families understand how to more effectively amplify their collective voice.
After the meeting, the Hongmili China Lipid Patient Network reviewed and summarized the discussion content and reporting results, further combed through the core appeals of patients and formed the direction for follow-up action. Through joint discussions, sharing experiences and creating action plans, patients and families not only have a clearer understanding of their needs, but also have improved their ability to participate in policy advocacy and drive group improvement, and have achieved an empowerment shift from "passive waiting" to "active voices."
Activity Review | HoFH / FCS Patient Advocacy Workshop was held in Beijing on September 19, Group discussion and consensus of action
● Number of posts - ---------- 12
● Additional Concerns -- ---------- 62 people
● Total attention --- 4,561 people
● Monthly Readings - - 2965
● Number of people shared monthly - - 211
● Number of posts - - 6
● Additional Concerns --- ---------- 15 people
● Total attention --- 1882 people
● Monthly Readings - - 259
● Number of people shared monthly - - 13 people
● Number of posts - - 6
● Additional Concerns ---------- 26 people
● Monthly Concerns --- - 837 people
● Monthly Views - - 3641 people
● Number of posts - ---------- 2
● Additional Concerns ---------- 2 people
● Monthly Concerns --- 272 people
● Monthly Views - 967 people
● Number of published articles --- 3
● New Attention - ---------- 13 people
● Monthly Concerns --- - 845 people
● Monthly Views - - 335 people
● Number of published articles --- 3
● New Attention - ---------- 21 people
● Total attention --- 1740 people
● Monthly Readings - - 7096 people
HoFH Patient Documentary Shooting
Hongmili participate in annual meetings of national and international patient organizations
Work planning and division of labour optimized for Q4 2026
Annual upgrade and optimization of the Hongmili Support Home visual manual
Email
hongmili@fhchina.org.cn
Tel
029-81325132
Address
Room 1802, Block A, National Digital Publishing Base, No.996 Tianguqi Road, Gaoxin High-tech Zone, Xi'an, China