Homy Grain Mutual Aid Home 2025 Annual Work Summary
As the year draws to a close, it's time to look back and look forward.
Here, we cordially invite you to pause and look back with us.
Embark on a memorable journey for Hongmili Mutual Aid Home in 2025.
Let's recount the shared marks that belong to us.
Relive the touching moments and growth we've shared along the way.
Table of Contents:
Scientific Research Section
《Red Rice Grain Patient Registration System》Online
The "Red Rice Grain Familial Hypercholesterolemia Research Special Fund" was launched.
The "2025 Survey on the Psychosocial Adaptation of Patients with Homozygous Familial Hypercholesterolemia (HoFH)" was released.
The study "Trauma and Meaning Reconstruction of Diagnostic Delay in HoFH Patients" was launched.
Patient Services
Carry out free medical consultation support projects
Initiating the HoFH Lipid Purification Funding Project
Dissemination Section
Collaborative dissemination of content across multiple self-media platforms
Red Rice Grain Mutual Aid Home's official Chinese and English websites launched
Learning Section
Breakthrough
The first FH Conference and Patient Exchange Meeting was held.
Conducting the first batch of FH patient story interviews
Currently, China lacks a nationwide database of febrile hepatitis (FH) patients, making it difficult to assess the disease burden and prevalence trends. Primary care physicians also have insufficient knowledge of FH, leading to high rates of misdiagnosis and missed diagnosis. On the other hand, FH patient management is fragmented across families, lacking genetic counseling and long-term follow-up support. A systematic registration system is needed to advance FH research and management. Compared to government departments or medical institutions, having patient organizations develop and operate a patient registration system is a feasible, effective, and most advantageous model.
Red Rice Grain Mutual Aid Home, as an organization for FH patients, plans to build an FH patient registration system.
Eleven staff members (including software developers and patient organization members) participated, contributing a total of over 530 hours and more than 50 system tests.
August 2025,The system is now in internal testing.
Used for testing within the patient community.
two,The "Red Rice Grain Familial Hypercholesterolemia Research Special Fund" was launched.
Hongmili Mutual Aid Home, in conjunction with the Zhejiang Ruiou Charity Foundation, launched the "Hongmili Familial Hypercholesterolemia Research Special Fund" to fund research projects on familial hypercholesterolemia. The initial funding amount is 3 million RMB, specifically supporting basic research, epidemiological and natural history research, and gene therapy research on FH.
Important Announcement | Applications Open! Hongmili Familial Hypercholesterolemia Research Fund
After rigorous review by the foundation, 32 valid project applications were ultimately confirmed, including 12 in basic research, 12 in clinical and epidemiological research, and 8 in advanced therapy development; plus 1 short-term visiting scholar application. Applicants came from over 20 universities, hospitals, and research institutions, including Peking University, Fudan University, Zhejiang University, Wuhan University, Sun Yat-sen University, Xi'an Jiaotong University, Peking Union Medical College Hospital, and the Chinese Academy of Sciences.
Application deadline: June 15 | Hongmili Familial Hypercholesterolemia Research Fund
This special fund invited 19 domestic and international experts from the fields of basic research, clinical and epidemiological studies, and advanced therapies to form a review committee. Based on the review rules of fairness, impartiality, conflict of interest avoidance, and scientific merit selection, the committee conducted a comprehensive and thorough evaluation of the feasibility and innovation of the proposed projects, clinical needs and translational prospects, research team qualifications, and budget rationality through a combination of written review and online meeting review. The final evaluation results included project scores and detailed written comments.
The review committee confirmed that 10 projects were funded, including 4 basic research projects, 5 clinical and epidemiological research projects, and 1 advanced therapy development project; in addition, one researcher received short-term visiting scholar funding.
As a patient organization that has always stood by FH patients, we deeply understand that true health should not only consist of cold, hard indicators, but also include warm hope and a dignified life. To this end, we collaborated with Associate Professor Zhang Yudi's team from the Department of Sociology at Beijing University of Science and Technology to initiate and complete this first nationwide survey on the psychosocial status of adult HoFH patients in China, aiming to make those "invisible wounds" visible, valued, and healed.
Convenience sampling was used to select adult HoFH patients registered with the "Red Rice Grain Mutual Aid Home" patient organization as the survey subjects.
Four,The study "Trauma and Meaning Reconstruction of Diagnostic Delay in HoFH Patients" was launched.
Diagnostic delay is a common challenge faced by HoFH patients. Diagnostic delay leads to prolonged exposure to high levels of low-density lipoprotein cholesterol (LDL-C), accelerating the progression of cardiovascular disease and exacerbating psychosocial burden.
To delve into the dynamic mechanisms of the unique psychosocial trauma caused by diagnostic delay in HoFH patients, and to focus on the process by which patients actively or passively initiate meaning reconstruction after experiencing prolonged misdiagnosis and diagnosis, and to help HoFH patients obtain more support, Hongmili Mutual Aid Home, in collaboration with Associate Professor Zhang Yudi's team from the Department of Sociology at Beijing University of Science and Technology, launched a study on "Trauma and Meaning Reconstruction of 'Diagnostic Delay' in Homozygous Familial Hypercholesterolemia (HoFH) Patients," and simultaneously recruited research subjects from our community.
May–June 2025
An idea is formed.
July–August 2025
Drafting of the research proposal.
November 2025,
Ethical review approvalallow。
As of December 31, 2025, interviews with 11 HoFH patients have been completed.
