[Homy 2023 Annual Work Report] Warm-hearted, humble, patient, dedicated, and conscientious.
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Capturing TimeCounting the precious things.
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Looking back at Red Rice Grain's 2023...
The "Rare Diseases: Born Extraordinary: Heartwarming Science Popularization Series" is a joint production of PeaSir, a public welfare platform for popularizing genetics and rare diseases, and the Disease Challenge Foundation. It is published monthly, and the 66th issue focuses on the first batch of rare diseases in China [46] - homozygous familial hypercholesterolemia (HoFH).
The protagonist of this comic is Da Chengzi, a senior patient of FH. We thank Da Chengzi for sharing her experience, thank Dr. Wang Luya's team for their guidance and review, and thank the entire creative team for revising and polishing the article for more than a month to produce this authentic and professional popular science article. We hope that more people will understand FH and pay attention to it through this popular science article, so as to achieve early detection and early intervention!
Click the blue text below to read the article:
The last day of February each year is International Rare Disease Day. This year's theme is "Share your colours," which can be interpreted as "light up the colors of your life."
On the eve of Rare Disease Day, we at Red Rice Grain created a series of popular science images and actively promoted them on self-media platforms such as WeChat official accounts, video accounts, and Zhihu.At the same time, they participated in the Tencent Charity Little Red Flower Day "Rare Diseases: A Path to Medication" campaign, earning Little Red Flowers by answering questions, donating steps, and donating money, and donating Little Red Books to advocate for more people to pay attention to and support the rare disease community.
Click the blue text below to read the article:
On August 27th at 1:30 PM, an online science lecture on hyperlipidemia, jointly organized by Shanghai Xinhua Hospital, Shanghai Children's Rare Disease Diagnosis and Treatment Center, and the Pain Challenge Foundation, started on time. Hongmili organized patients in the group to actively participate in this online lecture, hoping to help answer their questions about daily diet and medication.
At the meeting, Professor Qiu Wenjuan and Dr. Xia Yu from the Department of Pediatric Endocrinology and Genetics at Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, along with Director Feng Yi from the Department of Clinical Nutrition and Dr. Xiao Bing from the Clinical Genetic Counseling Center, shared their insights on the full life-cycle management of hereditary hyperlipidemia (drug therapy and nutritional management of familial hypercholesterolemia, management of sitosterolemia, and management of hereditary hypertriglyceridemia). Many patients expressed that they benefited greatly from the presentation.
FH Awareness Day was established in 2012 by the International FH Foundation to raise global awareness of familial hypercholesterolemia (FH).
To raise awareness and understanding of FH among Chinese residents and better prevent the harm caused by the disease, this is the second time that Hongmili has joined hands with the International FH Foundation on September 24 to promote and popularize FH in order to increase Chinese residents' awareness and attention to FH.
We created a series of science popularization images and shared them on self-media platforms such as WeChat official accounts, Xiaohongshu, and Zhihu. We also mobilized our FH friends and family to share and promote them, hoping that more people would learn about FH and pay attention to it through this science popularization, so as to achieve early detection and early intervention!
Click the blue text below to read the article:
[September 24th - FH Awareness Day] Let's promote FH knowledge together with Red Rice Grain!
From July 21 to 23, 2023, the 5th Rare Disease Cooperation and Exchange Conference, initiated by the Disease Challenge Foundation and guided by the China Rare Disease Alliance, was successfully held in Beijing.
Hongmili was also invited to participate in this conference. This year's exchange meeting was themed "Patient Participation: Dialogue on Rare Cases."Three days of listening and learning, through the sharing of doctors, academics, enterprises and other sectors, and by understanding the development history and experience of other patient organizations, have given us a deeper understanding of the work that our organization needs to carry out in the future, the problems that need to be solved in the treatment process for the FH population, and how to advocate for the interests of our group and provide assistance.
Click the blue text below for meeting details:
From September 8th to 10th, 2023, the 12th China Rare Disease Summit Forum, themed "Walking Together on the Rare Path, Meeting in Hunan for the Future," was held in Changsha. It was jointly organized by the Kode Rare Disease Center, Xiangya Hospital of Central South University, and CITIC Xiangya Reproductive and Genetic Hospital.
The three members of Hongmili also actively participated in the 12th Rare Disease Summit Forum, learned about new treatment methods in the field of rare diseases, and summarized and outlined some of the content and knowledge points of this conference, sharing them with everyone in written form.
New technologies aid in rare disease research --- [Gene Editing and Reproductive Technology]
From November 2nd to 5th, the 25th National Cardiovascular Conference of the Chinese Medical Association and the 2023 Hubei Provincial Cardiovascular Conference were held in Wuhan. The conference was hosted by the Chinese Medical Association and its Cardiovascular Branch, and organized by the Hubei Provincial Medical Association and its Cardiovascular Branch, with the assistance of Renmin Hospital of Wuhan University, Tongji Hospital affiliated to Tongji Medical College of Huazhong University of Science and Technology, Union Hospital affiliated to Tongji Medical College of Huazhong University of Science and Technology, and Zhongnan Hospital of Wuhan University.
Members of the Red Rice Grain organization also attended the annual meeting and shared the knowledge related to blood lipids from the meeting in the patient group, hoping that everyone can learn, communicate and make progress together!
On the afternoon of October 29th, we and other FH patients went to the Department of Nephrology at the Second Affiliated Hospital of Xi'an Jiaotong University to learn about and study the blood purification equipment and technology used in the department.
Led by Director Fu Rongguo and Director Wang Li, the group visited the hemodialysis center in turn. They received a detailed introduction to everything from how the purified water used in the dialysis process is produced to the number of beds the department can currently accommodate, the number of cases it has successfully treated, the maturity of the technology, and the separate areas needed for hemodialysis of special populations (such as hepatitis B patients).
Dr. Gao Jie also gave a detailed introduction to the lipid purification technology, covering its classification, principles, procedures, and costs, answering many of everyone's questions.
For more details, please click the blue text below:
On the morning of October 28th, before the start of the FH free clinic event at the First Affiliated Hospital of Xi'an Jiaotong University, at the request of FH patients, we went together to the Department of Critical Nephrology and Hemodialysis at the First Affiliated Hospital of Xi'an Jiaotong University to learn more.
Dr. Wei Meng from the Department of Critical Care Nephrology and Blood Purification gave a detailed explanation of five aspects: the composition of blood, the choice of blood lipid purification for different diseases, the principle of blood lipid purification, indications, and which method of blood lipid purification should be used for people with familial hypercholesterolemia, thus demystifying blood lipid purification for everyone.
For more details, please click the blue text below:
On the evening of October 28th at 7 PM, the Red Rice Grain FH (Family Members) sharing and exchange meeting officially began. A total of eight families attended that evening. The meeting was hosted by Sister Nazhen, and it abandoned the formality of typical meetings, emphasizing a relaxed and open atmosphere. Everyone sat in a circle, and Sister Nazhen first shared her own experiences, introducing the formation process of the Red Rice Grain organization and its current members. Then, the eight families took turns sharing their stories.
Xuanxuan's father, who insists on giving his child regular lipid purification treatment; Yaoyao's parents, who meticulously care for their child after a liver transplant without allowing any mistakes; Xiaoxi, who bravely fought against her illness after being misdiagnosed for many years; Xiaozhao, who continuously learns and follows the progress of gene therapy... Everyone candidly shared their vulnerabilities and pressures in their own sharing, and then drew strength from the sharing of others to continue moving forward. This is probably the significance of the sharing session.
This was Hongmili's first time organizing a small meet-up. Although there were many shortcomings, it was at least a first step, and we can learn from the experience and move forward. We hope to have more opportunities like this in different cities in the future, to hear more FH stories, and to let more people know about and pay attention to FH!
The Red Rice Grain FH Buddies Sharing and Exchange Meeting was successfully held in Xi'an!
The FH Children Skim Milk Sponsorship Program, launched in September 2021, selects 50 FH children to receive a case of skim milk every month for one year.
Due to the impact of the pandemic, the project disbursement was completed for 12 months by June 2023, with 71 people receiving the aid each month, and a total of 766 boxes of skim milk mailed out.
Each carton of milk carries our blessings. We hope every FH baby grows up healthy and strong, and we also hope that everyone will continue to develop the good habit of drinking skim milk even after the project ends.
Lipid purification is a recognized important adjunctive treatment for free-living hemorrhage (FH), especially for patients with holo-free hemorrhage (HoFH), both domestically and internationally, and can reduce LDL-C levels by 55% to 70%. However, the awareness and application rate of this technology among the FH population in China is very low. According to our survey statistics in patient groups, 94% of HoFH patients have not adopted this method, mainly because they are unfamiliar with lipid purification treatment and are concerned about its safety.
We launched the lipid purification funding program in September 2021. As of October 2023, we have funded 7 homozygous FH patients, who have received a total of 16 lipid purification treatments, with a total funding amount of approximately RMB 45,000.
We hope that everyone can take lipid purification treatment seriously, understand its safety and effectiveness, and undergo treatment regularly.
On the afternoon of October 28th, a free clinic organized by Director Wang Lüya and the Department of Cardiology of the First Affiliated Hospital of Xi'an Jiaotong University was held in [location missing].The First Affiliated Hospital of Xi'an Jiaotong Universityconduct.
As an FH patient support group, we also went to the free clinic to provide assistance. In order to reduce the burden of treatment for everyone, we provided double subsidies for accommodation and transportation expenses for the FH patients who participated in the free clinic.
After the meeting, we collected and verified the receipts. On November 24, after confirming with each of the 15 participants in the free clinic, we confirmed that all subsidies had been received.
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Learn about coronary artery calcification in one article! Understanding Lipoproteins in One Article (a) This article will introduce you to a new weapon for lowering lipids—PCSK9 inhibitors. [Must Read] How to interpret a genetic testing report for familial hypercholesterolemia (FH)? What is high-density lipoprotein cholesterol?
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