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Hongmili China Lipid Patient Network - August 2026 Monthly Work Report
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 August 2026 new registrations were added for 4 people, namely:
As of August 30, 2026:
The cumulative total was completed
132 people have completed registration
Among them,
Children 56 people,
Adults 76 people.
Completed
80 people have completed registration
Among them,
Children 17 people；
Adults 63 people.
This month, we conducted multiple rounds of review and verification of the content for the "2026 Survey Report on the Survival Status of Chinese HoFH Patients," ultimately finalizing and printing the document.
The research report is divided into five main sections, each addressing the research background, the current clinical diagnosis and treatment status of HoFH patients （patient baseline information, cardiovascular risk factors and burden, current treatment practices, and participation in clinical trials）。The study on diagnostic delays）, the section on the economic burden faced by HoFH patients and the analysis of key issues were compared with an international HoFH patient population； and, in the discussion and policy recommendations, existing findings and proposed solutions were presented to accurately depict China’s HoFH patient population’s current situation.
A version has now been developed for both children and adults with sitosterolemia. We completed the registration questionnaire and held one internal, in‑depth discussion about the specific contents of the phytosterol registration questionnaire； this allowed us to identify the points that needed further revision and which still required refinement and testing.
Official accounts of WeChat, Little Red Book, Douyin and others
58 people
17 people
30 minutes
10 people
4 people
As of 31 August 2026, the community had gained a total of 36 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 | 36 | 2885 |
| Number of registrants | ||
| Number of followers of self-media accounts | ||
| total | 113 | 9233 |
（ 1 ） International exchange and cooperation
☑Item 1: Conduct online meetings with FHEF to promote a number of cooperation needs
On 14 August 2026, a meeting was held with Elsie of the FH Europe Foundation to describe hongmili grains' work this year and priorities for the next steps, and to identify four needs for collaboration: jointly establishing a glycemic awareness day, jointly conducting a patient perspective study, sharing training materials, and jointly presenting an institutional picture book. The two sides reached a preliminary consensus on the direction of future cooperation.
☑Item 2: Participate in the FHEF Community Call and synchronize the FH Awareness Day Program
Join the FHEF Community Call on FH Awareness Day to learn about global advocacy trends and synchronize the hongmili Grain Participation Program.
☑Item 3: Recording Video Support Magdalena's application for the EURORDIS Black Pearl Award Recording Video
Support FH Europe Magdalena Daccord's application for the EURORDIS Black Pearl Award, Demonstrate the recognition and support from Chinese patient organizations for her, thereby enhancing the visibility of the Chinese FH community in international advocacy efforts.
☑item 4：Submit information to FHEF to participate in the FH Awareness Day Campaign
Chen submitted personal information to FHEF for use in this year's FH Awareness Day Campaign, Promote visibility for Chinese FH patients in international advocacy efforts.
☑Item 5: Complete the preliminary questionnaire for the Global Heart Hub Unite (GHH) Summit speaker
Chen completed the initial questionnaire for the Unite Summit speaker in preparation for the Dublin Summit in November.
☑Item 6: Submission of Intention Application for Health Policy Training
Chen Nazhen SubmitGHH Health Policy TrainingA letter of intent （dated 5 August） was submitted to seek participation in global policy training so as to enhance policy‑advocacy skills.
☑item 7: Submit GHH Unite Summit Excellence Award apply
Submit a Unite Summit Excellence Award 2026 project application to demonstrate hongmili's practical results in patient engagement and real-world research.
（ II ） Clinical trials and drug accessibility
☑Item 8: lometape – issues relating to the drug’s availability in China and to patients’ payment and reimbursement for its use:
We conducted targeted communication and coordination with Kasei Medical Consulting （Shanghai） Co., Ltd。The focus will be on tracking information about which pharmacies sell the company’s marketed drugs once they enter the Chinese market, as well as their pricing； and on researching regional public‑benefit insurance reimbursement rates and related policies。At the same time, identify patients in the community who are willing to use the drug.Based on this, the information collected about pharmacies, prices, and reimbursement policies was promptly organized and shared with the community of patients to help them better understand drug accessibility and financial burdens, thereby providing a reference for future medication choices.
☑Item 9: Promote the clinical trial portal on the official website
Promote the hongmili grain website to increase the clinical trial portal of GHH, which has been launched in August.
☑Item 10: Assist in matching children and adolescents PCSK9 inhibitors clinical trial participants
Assist in the identification of children (2-6 years) and adolescents (12-18 years) in the community with PSK9 inhibitor clinical trials, and facilitate contact between parents of children and clinical centers to help patients access potential treatment opportunities.
（ 3 ） Academic research and professional engagement
☑Item 11: Participation in PerMed FH Delphi study （HeFH） – second round
Participate in the second round of the PerMed FH Delphi Study (HeFH) (July 2026) to provide professional advice from a patient's perspective and push FH research closer to patient needs.
（ IV ） – Advocacy and dissemination
☑ITEM XII: Completion of the outline of the international cycle interview
Complete the expert interview outline and interview expert confirmation of the international circulation compilation, and prepare for the subsequent media dissemination of the HoFH report.
☑Item 13: Review of GHH Heart Valve Promotional Materials
Review GHH Heart Valve promotional materials to ensure accurate Chinese expression that aligns with the context of Chinese patients, supporting the localization of international advocacy campaigns in China.
In connection with drug accessibility and health‑insurance policy advocacy, we will organize a patient‑advocacy workshop for HoFH/FCS patients； we will design the format and content of the workshop, publish a public‑account article to recruit participants for the workshop, and invite subject‑matter experts, among others. [Workshop Registration] September 19 · Beijing | HoFH/FCS Patient Advocacy Workshop – we invite you, if you are willing to speak out .
Domestic siRNA drug SAL0195 bedside trial approved for the treatment of elevated lipoprotein (a)
Research Progress | Plozasiran in the Treatment of Hypertriglyceridemia and Familial Chylomicronemia
Research Advances | From Genes to Health: What Family Hypercholesterolemia Offers Us
Research Progress | All Age Pediatric Screening for Familial Hypercholesterolemia
[Case Sharing] Efficacy and Safety of Lometapine in Homozygous Familial Hyperbilirubinemia (HoFH)
[Invitation] September 18, Beijing | 2026 China HoFH Patient Report Launch Event
● Number of posts - ---------- 13
● Additional Concerns --- - 71 people
● Total Attention - - 4493 people
● Monthly Readings - - 2836 people
● Number of people shared monthly - 151 people
● Number of posts - ---------- 13
● Additional Concerns --- ---------- 16 people
● Total attention --- 1867 people
● Monthly Readings - 652 people
● Number of people shared monthly - 43 people
● Number of posts - --- 0 posts
● Additional Concerns --- ---------- 7 people
● Monthly Concerns --- 806 people
● Monthly Viewership - --- 180 people
● Number of posts - --- 0 posts
● Additional Concerns --- ---------- 6 people
● Monthly Concerns --- 270 people
● Monthly Views - --------------- 9103 people
● Number of posts - --- 0 posts
New Attention - - 33 people
● Monthly Concerns --- - 844
● Monthly Views - - 334 people
● Number of posts - ---------- 14
● Additional Concerns --- ---------- 15 people
● Total attention --- 1730 people
● Monthly number of reads ----------- 14,501 people
Organizing the launch event for the 2026 China HoFH Patient Survival Status Research Report
Preparation for HoFH / FCS Patient Advocacy Workshop
Review and Summary of HoFH Report Conference and Workshop
Written by Song Yun
Audited by Chen Nazhen
Typography: Yani Wang
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