Homy FH Patient Organization 2024 Annual Work Summary

Learning, like knowledge, requires constant progress; otherwise, it regresses. In 2024, our organization's members maintained their enthusiasm for learning and exchange, actively participating in various conferences. This year, we participated in 10 offline conferences, covering several important areas including rare diseases, pediatrics, reproductive genetics, and patient organization development. Through these valuable conference opportunities, we were able to stay at the forefront of industry development and keep abreast of the latest research progress and developments in the field of rare diseases both domestically and internationally.

What is particularly valuable is that through these activities, we met many professional doctors, scholars, and other patient organizations. We all shared a common goal: to advance rare disease research and patient services. These in-depth exchanges and collaborations not only greatly enhanced the professional capabilities of our team members but also significantly strengthened the overall capacity building of our organization, playing an irreplaceable and vital role in promoting the in-depth development of our patient services.

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From August 19 to 27, 2024, all members of the Hongmili FH Patient Organization and First Aid Training Business conducted their second workshop in Xi'an, where they had in-depth discussions on Hongmili's work goals for the second half of 2024.

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In 2025, we will also carry out popular science publicity activities on more relevant awareness days, such as March 24th - Lipoprotein (a) Awareness Day and May 4th - Homozygous Awareness Day, to let more people understand FH, promote early diagnosis and early intervention of FH, and help more FH patients stay away from cardiovascular diseases.

The power of patient stories is immeasurable. They not only embody an individual's courage and perseverance in fighting the disease, but also contain a love for life and hope. We hope to spread awareness of FH through real patient stories, and we also hope that more FH patients will be willing to actively share their stories.

On August 3, 2024, the first consultation meeting for patients with familial hypercholesterolemia (FH) was held as scheduled at the First Affiliated Hospital of Xi'an Jiaotong University. This consultation meeting was initiated by the team of Dr. Wu Yue, Director of the Department of Cardiology, and assisted by the Hongmili FH Patient Organization. A total of 11 FH families were invited to participate, with 21 patients and their families from Fujian, Sichuan, Hebei, and Shaanxi provinces. That morning, in addition to providing free medical checkups for patients, colleagues from the Hongmili First Aid Training Team also provided on-site guidance and training to FH patients on how to perform correct and high-quality cardiopulmonary resuscitation (CPR) so that they could provide emergency care in case of an emergency.

To help FH patients build a platform for learning and communication, we launched the "Red Rice Grain FH Patient Community Online Salon" project in September 2024, which includes several sections such as monthly communication meetings and doctors' popular science lectures.

• Four monthly communication meetings (September-December)
• 2 Doctors' Popular Science Lectures

Currently, there is a relative shortage of doctors in China with specialized expertise in treating febrile hepatitis (FH), leading to a risk of misdiagnosis or missed diagnosis for many patients when seeking medical attention after symptoms appear. Even when diagnosed with FH, some patients report that their doctors lack relevant experience and are unable to provide targeted treatment advice and medication plans. Therefore, FH patients generally face difficulties in accessing medical care, with questions such as "Which hospital should I go to?" and "Which doctors specialize in treating FH?" becoming a major concern for them.

To address this challenge, Hongmili has been committed to building a nationwide FH (French Hunger) treatment network, uniting FH specialists across the country to ensure patients receive professional diagnosis and treatment. In 2024, six senior experts joined the Hongmili FH treatment network, and we have compiled detailed information on each expert's areas of expertise and appointment details. In the future, we will continue to expand the FH treatment network, broaden its coverage, and invite more professional doctors to join, allowing FH patients to receive professional treatment conveniently nearby.