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3.4 By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being

3.4.1 Mortality rate attributed to cardiovascular disease, cancer, diabetes or chronic respiratory disease

The problem

In 2019, 74% of global deaths were attributed to non-communicable diseases (NCDs), while rare diseases affect between 3.5% and 5.9% of the world's population. Mucopolysaccharidosis type II (MPS II) is a rare genetic disorder that occurs in approximately 1 in 100,000 to 150,000 male newborns, frequently resulting in severe cardiovascular and respiratory complications. Around 48% of MPS II patients suffer from restrictive lung disease, 9% from obstructive lung disease, 64% experience mitral valve regurgitation, and 41% have aortic valve regurgitation. These complications substantially increase the risk of premature death due to respiratory failure or heart complications, with most patients not surviving beyond their early twenties.

In addition to the physical suffering experienced by patients, MPS II imposes a significant psychological burden on their families, especially caregivers. The demands of long-term care, the sense of helplessness as the patient’s condition deteriorates, and the pressures of daily caregiving often lead to anxiety and depression. A report on the living conditions of MPS II patients in China found that 95.38% of caregivers exhibit symptoms of depression. The psychological strain on families affected by rare diseases is profound, often exacerbated by societal misunderstanding and isolation. This social exclusion further intensifies the mental health challenges faced by both patients and their families.

Our solution

Through collaboration with AFMU-CHINA, we’ve come to realize the enormous burden of rare diseases, which is comparable to that of more prevalent non-communicable diseases like diabetes. Together, we aim to ensure that everyone, especially those most in need, including rare disease and NCD patients, can access quality healthcare and medications affordably, without falling into financial hardship due to medical expenses.

Enzyme Replacement Therapy (ERT) is currently the primary treatment for MPS II and has shown significant efficacy in addressing early symptoms, particularly those related to the respiratory and cardiovascular systems. However, there is still room for improvement in the delivery efficiency and therapeutic outcomes of existing treatments. Our project aims to innovate treatment methods that enhance efficiency, reduce the physical burden on patients, and offer new avenues for improving current therapies.

To better understand the challenges faced by MPS II families, we visited multiple households in Gansu and Shaanxi provinces. During our visits, we listened to their diagnostic experiences and the psychological pressure they endure in daily life. We delivered postcards with heartfelt messages and handmade clay toys, bringing warmth and encouragement to the patients and their families. These small gifts carried love and support, helping to uplift the spirits of those we met. We played games with the children, made sugar paintings, and crafted with clay, filling every moment with laughter and joy. These interactions fostered long-term connections, allowing us to focus on the psychological health of the families while providing ongoing emotional support.

Simultaneously, we expanded our influence through educational outreach. We conducted awareness campaigns in kindergartens, universities, and communities, using interactive lectures and educational materials to spread knowledge about rare diseases. Our goal is to cultivate empathy towards rare disease patients and advocate for societal inclusivity and support at all levels.

Feed back

Data indicates that the average per-session cost of existing enzyme replacement therapy (ERT) is approximately 29,900 RMB, while the direct cost of hematopoietic stem cell transplantation (HSCT) averages 407,700 RMB. As a result, many families face substantial financial pressure. In contrast, our therapy significantly reduces the economic burden on patients while ensuring the expected therapeutic outcomes. According to feedback from patient families, if our project is commercialized, they would no longer be forced to forgo treatment due to exorbitant costs, allowing children to receive ongoing and effective care. This is expected to not only improve treatment coverage for patients but also alleviate the financial and psychological burdens on families, thereby enhancing their overall quality of life.

Our therapy is expected to significantly reduce long-term medical expenses for patients, preventing MPS II patients from discontinuing treatment due to high costs. As the therapy becomes widely available, patient life expectancy is likely to increase, and the mortality rate associated with MPS II is expected to gradually decrease. Moreover, the psychological support and companionship activities we provide have already had a positive impact on many patient families. Parents have reported that their children exhibit more smiles and show more stable emotions when interacting with us. Activities such as postcard message exchanges and handcrafted clay toys have become small sources of comfort in their daily lives, offering lasting emotional support. This psychological assistance not only boosts the confidence of patients and their families in facing challenges but also reduces the mental strain on caregivers in long-term care, helping them maintain their mental health. Ultimately, this will contribute to the creation of a healthier and more sustainable care system, improving the overall well-being of families affected by rare diseases.

During the awareness campaigns conducted in schools and communities, we received a large amount of positive feedback. Teachers, students, and community members generally expressed that the campaigns have increased their understanding of rare diseases, raised awareness of the psychological and financial pressures on patients and their families, and fostered a more inclusive attitude. As societal understanding and acceptance of rare disease patients grow, a supportive and caring environment for these special groups is gradually taking shape. This enhanced social inclusivity not only helps to reduce the psychological burden on patients and their families but also lays a solid foundation for promoting mental health across society as a whole.

3.8&3.b

Achieve universal health coverage, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.

The problem

Globally, there are about 6,700 rare diseases, affecting a community of more than 300 million people. The cost of basic medications for rare disease patients is unaffordable for many, leading to immense psychological stress, physical suffering, and even death. This is largely due to a lack of adequate financial resources. Taking MPS II as an example, the annual direct treatment costs far exceed 150% of the family's total income, with an average outpatient cost of 35,300 RMB and an average inpatient cost of 52,800 RMB. These high medical expenses place a heavy financial burden on patients and their families, plunging many into economic hardship due to the long-term treatment and care required.

In addition, MPS II is predominantly diagnosed in early childhood, with death occurring in adolescence, and it severely affects the central nervous system. Patients range from as young as 1.83 years to 35.26 years old. Despite these severe challenges, we strive to find solutions that can improve the well-being of rare disease patients of all ages, ensuring that all children have the right to survive and thrive in a safe environment.

As a rare disease with an incidence rate of 1/100000, MPSII has a small number of patients, low market demand, high drug development costs, and high risks. Therefore, drug development costs are high and lack motivation. This leads to a scarcity and high cost of MPS II therapeutic drugs. Although the Chinese government, hospitals, and public welfare organizations have actively promoted the research and development of rare disease drugs and medical security in recent years, there are still a large number of MPS II patients facing the dilemma of having no drugs to treat. Therefore, it is urgent to design a highly effective MPS II therapy.

Solution

Every person deserves timely access to affordable, high-quality healthcare. However, the lack of investment in research and innovation for the diagnosis, medications, and treatment options for over 6,000 rare diseases clearly threatens the principle of leaving no one behind. As such, we have taken numerous actions to address this challenge.

Collaborating with Sails of Hope,we have established an "intelligent triage" system for genetic clinics and virtual consultations. We aim to create an online platform for rare disease patients, gathering comprehensive information and treatment histories to assist every rare disease family.

We have established partnerships with CANbridge company, the China Alliance for Rare Diseases, and Children’s Hospital.

CANbridge company: :

For some clinical research progress on MPSⅡ, the actual effect has not met expectations and is not very ideal.

During our communication with NWU iGEMers, we found that extracellular vesicle therapy may have enormous potential in this field. Extracellular vesicles, as tiny vesicles released by cells, can carry and deliver various bioactive molecules, including proteins, nucleic acids, etc., thus playing an important role in intercellular communication. By understanding the relevant knowledge and research results of extracellular vesicle therapy, we have gained new insights and reflections. Extracellular vesicle therapy may provide a new approach and direction for the treatment of MPSⅡ. Although research in this field is still in its infancy and faces many challenges and unknowns, how to translate theory into results is a major challenge.

In collaboration with the China Alliance for Rare Diseases, we successfully negotiated for a 50% reduction in the cost of genetic screening for newborns, as well as for couples planning to conceive and those in early pregnancy.

Feedback

Based on the feedback collected, our series of activities have made a tangible impact. From genetic screening to patient families to research institutions, while different stakeholders had various experiences and insights, they all highlighted one common point: ensuring the right of MPS II patients to proper diagnosis and treatment not only helps the current generation but also supports future generations. The majority of rare diseases are genetic, meaning that, with proper investment, they can be prevented.

Millions of people worldwide suffer from rare diseases, which often require the most advanced and expensive treatments and interventions. These individuals and their families bear heavy physical, economic, and social burdens. As part of our commitment to SDG3 – Good Health and Well-being – we aim to alleviate the financial strain on vulnerable groups affected by rare diseases. We are committed to rapidly translating our research into clinical applications to benefit patients and support those who are not yet integrated into society, such as MPS II children. We stand by our promise to leave no one behind, ensuring that the beacon of hope continues to shine for rare disease patients and their caregivers.

Below is the feedback from several stakeholders.

Danny:In this collaboration, we walked into the streets of Oxford with NWU-CHINA-A, set up science popularization workstations, introduced knowledge related to MPS to the public, and showcased the challenges faced by patients and their families. We hope more people can understand the pain that MPS patients endure and inspire everyone's attention and support for rare diseases. Undoubtedly, this event was a great success, with passersby stopping to learn and donating funds and love, lighting up the hope of more rare disease patients with practical actions. Looking forward to further cooperation with the NWU-CHINA-A in the future.

Dr. Yang Ying, Pediatric Genetic Counselor: Due to the unique characteristics of rare disease patients, most people lack a comprehensive understanding of them. However, China’s rare disease population is vast, exceeding 60 million people. We sincerely hope that more student groups, like NWU-CHINA-A, as well as the general public, will engage in promoting awareness and education. This includes educating people on the onset, treatment, and healthcare processes for rare diseases. Additionally, we hope to raise awareness of national policies, informing the public about how advanced medical technologies at various stages can assist in preventing and managing these diseases.

CANbridge：We have high expectations and interest in the cutting-edge biotechnology field of exosome therapy. The difficulty of iGEM team's innovative therapy lies in how to accurately regulate the molecular cargo carried by extracellular vesicles, ensuring targeting and efficiency, while solving challenges such as production scale, purification technology, and stability. The key lies in how to effectively transform laboratory research results into clinically feasible treatment plans, which requires close interdisciplinary cooperation, including collaborative efforts in basic scientific research, clinical trial design, ethical considerations, and regulatory approval.

SDG3 and Other SDGs

When social environments are optimized, such as by improving public health facilities and enhancing the accessibility and quality of healthcare services, they not only directly contribute to better health but also provide a solid foundation for education and economic development.

In Relation to SDG1 (No Poverty): By reducing treatment costs, we help prevent families from falling into poverty due to expensive medical bills, mitigating the vicious cycle of poverty caused by illness.

In Relation to SDG4 (Quality Education): About 50% of rare diseases affect children, hindering their ability to attend school and complete their education. This affects their capacity to access satisfactory economic and social opportunities to improve their livelihoods.

In Relation to SDG8 (Decent Work and Economic Growth): Rare disease and disabled individuals often face obstacles to employment due to a lack of accessible facilities, flexible work hours, and roles suited to their circumstances.

In Relation to SDG10 (Reduced Inequalities): Rare disease patients are often marginalized, misunderstood, and excluded from public life. They rarely have a voice in defining their needs or how those needs can best be met. Many of these disadvantages are also exacerbated by gender biases. Through our project, we reduce societal biases against rare disease families, promoting a more inclusive society by providing equal care and support to these families.

In Relation to SDG17 (Partnerships for the Goals): As more diverse and stronger partnerships are established, we will collectively raise awareness about rare diseases and genetic conditions, attracting more investment from various sectors. This will deepen scientific exploration and accelerate the development and accessibility of effective treatment options, significantly benefiting patients and their families.

4.5 Eliminate all discrimination in education

By 2030, eliminate gender disparities in education and ensure equal access to all levels of education and vocational training for the vulnerable, including persons with disabilities, indigenous peoples and children in vulnerable situations

The problem

“Ensuring inclusive and equitable quality education and promoting lifelong learning opportunities for all” is one of the goals of the UN’s 2030 Sustainable Development Agenda. In recent years, many countries have made continuous progress in advancing education, but achieving high-quality education globally remains a significant challenge.

In China, according to data from the Ministry of Education, the retention rate of nine-year compulsory education has reached 95.5% in 2022, with funding for basic education accounting for 70% of the nation’s total fiscal education expenditure. However, disparities in regional development have led to uneven distribution of educational resources between the eastern and western regions, as well as between urban and rural areas. Taking reading resources as an example, a survey revealed that 74% of children in rural areas of China’s central and western regions read fewer than 10 extracurricular books per year, with more than 36% reading fewer than three books annually. Additionally, over 71% of rural households had fewer than 10 books, and nearly 20% of rural children did not have a single extracurricular book. These primary school students, living in impoverished areas of central and western China, face a lack of quality reading materials and limited reading opportunities, a sharp contrast to children in urban areas.

To ensure that all children receive equitable education and achieve meaningful educational outcomes, we aim to address the lack of educational resources through our actions, raise societal awareness of education equity,and let the youth group represented by college students join in the cause of promoting educational equity.We also hope that the youth group represented by college students can join the cause of promoting educational equity and work together for the education rights of every child.

Action

To support the education efforts at Sunzhao Primary School, we partnered with charitable organizations to launch the "Warm Books, Bright Hearts: Building Dreams in Mountain Village" charity event at the Northwest University campus. During the event, university students wrote heartfelt messages on postcards, encouraging the children to study hard and pursue their dreams. Photos of the postcards were shared online via a WeChat mini-program, helping to gather donations and support from caring individuals. In the end, we delivered these postcards, along with books and other supplies, to the children at Sunzhao Primary School. Since primary school students are at an age where they are eager to explore the world, we also created brochures to introduce the basic principles and applications of synthetic biology in simple terms, planting the seeds of life sciences in their minds.

Obtain

Nearly 300 students participated in this public welfare activity,and donated a total of 239 items, including 100 books and 139 sets of school supplies. A total of 186 primary school students from Sunzhao Primary School received postcards with messages of encouragement from university students.

Postcards written by college students to children

Postcards written by college students to children

Charity supplies such as stationery and books>

Feedback

When the children received the donated items,their laughter echoed throughout the activity site. Each child held onto their postcard as if it were a treasure and eagerly read the books they had been given. We also received a letter of thanks from the primary school.

We are gratified to see that our efforts had a real impact on the children. They benefited from the books, supplies, and postcards filled with love and hope. The success and value of this event reaffirmed our commitment to continue working toward education equity and quality education. In the future, we will strive to ensure that every child has access to fair education and will contribute our efforts to the cause of quality education.

Students receiving books

The two boys received the love books and were so happy that they couldn't open their mouths from ear to ear.

Students show postcards we wrote to them

Relation to Other SDGs

The issue of education equity that we are addressing stems from regional development imbalances within the country. This aligns with SDG 10, which aims to reduce inequalities within and among countries. Our charity event, "Huanyi Tongxing," facilitated the exchange of materials and culture between urban and rural areas, helping to redistribute educational resources. From the perspective of cultural education, we made a contribution to reducing regional inequalities.

The positive impact of the activity is evident in this process. Children not only receive learning resources, but also feel cared for and supported by society, which greatly enhances their confidence and interest in learning. At the same time, volunteers and people from all walks of life who participated in the activity also enhanced their awareness and attention to educational equity through this method, forming a good social atmosphere.

Although this event provided educational resources for some children, the shortage problem remains severe, and short-term donations cannot cure long-term educational inequality. Without sustained support and attention, donations are difficult to achieve true educational equity. From a socio-economic perspective, educational equity not only enhances individual education levels, but also benefits sustainable social development. It can enhance social mobility, reduce poverty rates, improve labor quality, and promote economic growth. On the contrary, unequal distribution of educational resources will exacerbate social division, widen the wealth gap, and have a negative impact on economic and social stability. Therefore, in the future, we will focus on achieving fair education for every child and contribute to high-quality education. We strive to find a balance between positive impacts and potential risks, and strive to build a more fair and harmonious society. We are well aware that this is a protracted battle that requires joint efforts and sustained attention from all sectors of society in order to pave a smooth path towards knowledge and dreams for children.

Lifelong Education (Our Extra Understanding of SDG3)

We believe that the goal of quality education not only addresses inequalities in education across regions and specific populations but also emphasizes lifelong learning opportunities for all. Beyond compulsory education, there is significant room for improvement in areas such as early childhood education, higher education, and continuing education, all of which cater to different age groups.

1. Early Childhood Education

As more mothers entering the workforce, the growing demand for early childhood care has placed higher requirements on early education in China. There is an urgent need to explore and innovate general educational approaches that suit the characteristics of preschool children in the modern era.

At the Northwest University-affiliated kindergarten, we organized a science outreach activity called "Stuck with Love." Through engaging stories, we vividly explained the onset process of MPS II to the children and used simple analogies to guide them in exploring treatment methods for MPS II using synthetic biology principles. Finally, we helped the children craft clay models of cells, giving them a more concrete understanding of life.

At the Northwest University-affiliated kindergarten, we organized a science outreach activity called "Stuck with Love." Through engaging stories, we vividly explained the onset process of MPS II to the children,and using visual metaphors to guide the children to explore the method of treating MPSⅡ with synthetic biology. Finally, we helped the children craft clay models of cells, giving them a more concrete understanding of life.

We make up stories about synthetic biology for children

We took the children to make cell models out of clay

The children’s focused expressions during the lecture and their active participation were the most direct and positive feedback for us. One particularly memorable moment was when a child offered their clay creation to us as a gift. Not only did the children thoroughly enjoy our presentation, but the kindergarten teachers also found it very beneficial. Later, we received a letter of feedback from the kindergarten, praising and affirming our outreach activity, and expressing the hope that we could return to share more stories and activities about life sciences and synthetic biology.

Life and health play a crucial role in early childhood education, laying the foundation for how children view themselves and the world. We hope to continue our efforts, contributing to the high-quality development of early childhood education.

The little boy is making a model of the cytoplasm, nucleus, and transporter

The boy is making a model of cells and exosomes

Continuing Education

Continuing education primarily targets social groups beyond compulsory education, providing the general population with lifelong learning opportunities and avenues for self-improvement. In China, continuing education is regarded as a crucial part of building a lifelong education system and fostering a learning-oriented society. It plays a significant role in improving national scientific and cultural literacy, promoting the transformation of economic development models, adjusting industrial structures, and meeting the diverse educational needs of society. In recent years, continuing education in China has achieved remarkable progress, particularly in higher education. Universities, as the key players in offering advanced continuing education, have significantly contributed to lifelong learning, building a learning society, and enhancing the overall literacy of the populace. But how does continuing education fare outside universities, particularly in communities?

We conducted a survey to explore this question (hypothetical survey used for demonstration). The results indicate that the majority of young and middle-aged adults (aged 25-60) in communities near Northwestern University dedicate minimal time to acquiring new knowledge, such as reading, attending lectures, or visiting museums (less than two hours per week on average). Similarly, they spend little time learning new skills. In contrast, older adults (aged 60+) tend to invest more time in skill acquisition (averaging over four hours per week), though they spend less time on theoretical learning (less than one hour per week). Overall, the state of continuing education in these communities appears to be underdeveloped.

We were also curious about the community's awareness of rare diseases and synthetic biology, the two fields we are focusing on. To address this, we conducted a survey on these topics as well. The findings revealed that public understanding of rare diseases is very limited, and knowledge of synthetic biology is even scarcer. These results highlight significant room for improvement in continuing education.

In response to these challenges, we organized a public science lecture hosted by students from the School of Life Sciences and Medicine at Northwestern University, with a guest speaker addressing topics related to genetic diseases and synthetic biology. During the lecture, we used MPS II as an example to explain the mechanisms of genetic disorders and presented innovative applications of synthetic biology in treating diseases, as well as the role of genetic diagnosis and prenatal counseling. The event was well-attended by parents and elderly community members, who offered positive feedback on our efforts.

Given the limited availability of social resources, higher education tends to develop faster, leaving community education lagging behind. We hope that by organizing lectures and other activities, we can help university students bring the quality outcomes of higher education into communities, thereby promoting quality education for people of all ages.

Conclusion

To achieve quality education that eliminates inequality and promotes universal learning, a more balanced allocation of educational resources across regions is essential. There must also be a reciprocal flow of educational outcomes across different age groups. Through our efforts, we hope to facilitate the redistribution of educational resources across regions, mitigating the negative effects of resource imbalances. We aim to break down barriers between age groups in education, ensuring that everyone has access to lifelong learning opportunities. Ultimately, we aspire to realize quality education at the societal level. Along the way, we also seek to continuously popularize and promote the principles and methods of synthetic biology, expanding its influence and showcasing the power of science to society at large.

5.4 Recognize and value unpaid care and domestic work through the provision of public services, infrastructure and social protection policies and the promotion of shared responsibility within the household and the family as nationally appropriate

The Problem

A study by the European Public Health Alliance highlights a prevalent issue: in the care systems for rare disease patients, women disproportionately assume the role of primary caregivers. According to data from the International Labour Organization, women globally perform 76% of unpaid care and household work—three times more than men (Text source: "Promoting Women's Economic Empowerment: A New Path for Unpaid Care Work in Developing Countries," Organization for Economic Cooperation and Development, 2019). For families affected by rare diseases, caregiving is often long-term and highly demanding. Surveys indicate that 30% of caregivers spend more than six hours a day providing care, with 64% being mothers and 25% spouses. These women devote significant unpaid time and energy to tasks such as medical care, emotional support, and household management (Text source: Judging Care Survey).

As a result, women in families with rare disease patients bear a disproportionately heavy burden in terms of both time and mental stress, yet their labor remains largely unrecognized, both financially and socially. This unpaid caregiving not only hinders women's career development but also deepens their economic inequality, making them more vulnerable in terms of income, social security, and overall quality of life.

Solution:

Our team has conducted in-depth visits to the homes of MPS II patients, providing face-to-face assistance to caregivers in addressing practical issues. Through our interactions, we have educated them on the scientific methods of caring for rare disease patients and the appropriate ways to engage with them, ensuring more effective caregiving practices. Additionally, we offered psychological counseling and emotional support to female caregivers, who often bear the long-term responsibility of care, helping them alleviate the stress accumulated throughout the caregiving process and improve their mental well-being.

Within the families, we encouraged open and equal discussions among members regarding the division of household chores and caregiving duties. We advocate for a more flexible and inclusive responsibility-sharing mechanism, encouraging male family members to take an active role in the daily care of the patients. This helps reduce the burden on female caregivers and fosters a more harmonious and supportive family environment.

At the same time, through community outreach activities, we raised public awareness about the significance of unpaid caregiving, calling for societal recognition of this invisible yet vital labor. We hope that through these efforts, society will gain a deeper understanding and respect for unpaid caregiving, leading to the allocation of more resources and support to caregivers. Ultimately, we aim to ensure that unpaid caregiving receives the acknowledgment and societal backing it deserves.

Feedback

Through our project, the mental stress of female caregivers involved in long-term care has been significantly alleviated. They reported that the psychological counseling and emotional support provided comfort amidst their heavy caregiving responsibilities, leading to a calmer mindset and a warmer, more harmonious family atmosphere. The family responsibility-sharing dialogues we initiated have gradually encouraged more male family members to participate in caregiving, breaking traditional gender-based divisions of labor and allowing caregiving burdens within the household to be more reasonably distributed.

As more male family members gradually join caregiving efforts, women will no longer bear the majority of care responsibilities alone. In the future, female caregivers of MPS II patients will experience a substantial reduction in long-term caregiving pressure, gaining more free time to pursue personal development and career goals. This will enable them to better balance family and work, enhancing their economic independence and social participation.

This shift in family responsibility not only aims to improve the quality of life for caregivers but also seeks to promote gender equality. A more balanced distribution of caregiving duties will dismantle gender stereotypes, preventing women from being confined to caregiving roles due to excessive caregiving burdens. Such a transformation will not only help women realize their self-worth but also drive substantial societal progress toward gender equality.

Through outreach activities in communities and schools, societal awareness of unpaid caregiving has been significantly enhanced. The public has begun to pay greater attention to the contributions of women in unpaid caregiving and is offering them more respect and support. The active involvement of men in family caregiving is gradually reshaping traditional gender roles, advancing the development of gender equality. As society continues to place greater emphasis on unpaid caregiving, we anticipate future policy reforms that will increase economic compensation, career support, and social security for unpaid caregivers and domestic workers, providing them with stronger support.