To understand public awareness of Epidermolysis Bullosa (EB), our team conducted a targeted online survey. Key findings:
Awareness is extremely low: Most respondents only vaguely recognized EB as a “rare skin disease” and had almost no knowledge of its pathology, clinical types, or patient challenges.
Information exposure is minimal: Over 80% of respondents had never encountered EB content on social media, science programs, or in daily life
Given this situation, we have identified the core objective of science popularization efforts: to break the deadlock of “information existing but difficult to access,” and to lower the barriers to public understanding of EB through diverse formats, making abstract medical knowledge tangible and engaging. In fact, professional resources in the EB field are not scarce; academic journals and medical guidelines have already documented detailed research findings. However, these contents are difficult for the general public to effectively absorb due to high professional barriers and monotonous presentation formats. Therefore, to bridge the gap between the public and EB through interactivity, we have organized offline educational science popularisation classes, created an original public welfare song, released science popularisation videos, and developed an online game.
One of our core tasks is to educate children aged 6-8 about rare diseases (with a focus on EB) and teach them how to treat children with rare diseases in a positive and supportive manner. We view this group as a key force in shaping the future, and the educational models and activities we have created are tailored to their preference for interactive learning. By educating these children about this rare disease and encouraging their active participation, we can effectively promote awareness of rare diseases and contribute to a more harmonious and inclusive societal environment.
Our first initiative was an in-person educational session for children about EB and other rare diseases. We held a class on EB for children aged six to eight in the community. Through activities such as drawing, interactive Q&A sessions, and games simulating the behaviors of butterfly babies, we used various methods to help children gradually understand EB. We explained why EB occurs, introduced the many challenges faced by EB patients in their daily lives, and helped children recognize other rare diseases. During this class, the children also learned to approach rare disease patients with respect and care, to step into the daily lives of those with EB, and to break down cognitive barriers through “tangible vulnerability.”
Lesson plan
- Exploring the little secrets of life
- Rare Disease Classroom：
- The Story of Butterfly Babies：
- Let's be friends together
We interacted with the children, asking them if they knew what they looked like in their mothers' wombs, and had them draw pictures on paper. We also told them that people with rare diseases have slight differences in their genes compared to normal people, using simple and easy-to-understand animated images to help them understand.
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In this section, we introduced various rare diseases to children and used cute and humorous descriptions to make them easier to understand. We also conducted science popularization lectures through interactive Q&A sessions.
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In this section, we first briefly introduced the symptoms of “butterfly babies” and showed the children a video about their daily lives. We also used a small game (wrapping the children's hands in plastic wrap to simulate the finger adhesions experienced by EB patients, and then having them hold a small ball in one hand and walk around the table) to help them understand the difficulties EB patients face in their daily lives.
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We tell children that rare diseases are not contagious. Not only that, we also guide children to treat not only EB patients, but also other rare disease patients with the right attitude. Let's be more tolerant, understanding, and caring towards them, and work together to create a harmonious and beautiful social environment.
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Conclusion:
In our science education program targeting children aged 6-8 on rare diseases (primarily epidermolysis bullosa, EB), we achieved significant educational outcomes and social value through interactive modes tailored to the cognitive characteristics of young children.
From the perspective of knowledge transmission, the children gradually developed a basic understanding of rare diseases through a series of activities. Through drawing and animated demonstrations, they gained an intuitive understanding of the abstract concept of “genetic differences,” realizing that the distinction between rare disease patients and the general population stems from minor genetic variations, rather than being “strange diseases.” The “Rare Disease Mini-Classroom” broke down unfamiliarity through engaging explanations, enabling children to memorize the names and characteristics of various rare diseases through question-and-answer interactions, thereby alleviating their initial fear of “unfamiliar conditions.” The “Butterfly Baby Story” used videos and simulation games to deeply convey the survival challenges faced by EB patients. When their hands were wrapped in plastic wrap, even picking up a small ball became difficult, allowing them to intuitively understand the meaning of “skin as fragile as butterfly wings.” This “concrete experience of fragility” had a greater impact than mere lectures.
In terms of emotional and attitudinal development, the activity successfully guided children to cultivate tolerance and respect for rare disease patients. By clearly informing them that “rare diseases are not contagious,” we first dispelled their fears; furthermore, we guided them to learn to treat differences with kindness.
From a long-term perspective, this activity sowed the seeds for shaping an inclusive future society. Ages 6–8 are a critical period for the formation of values. By allowing children to experience differences and learn respect through interaction, we have helped them develop a positive attitude toward vulnerable groups. These children are not only recipients of knowledge but will also become future disseminators—they may introduce rare diseases to their classmates at school or actively care for those in need in the community. The influence of this “intergenerational transmission” will continue to expand.
This rare disease awareness activity targeting young children not only effectively conveyed knowledge but also successfully touched emotions and shaped attitudes. It demonstrates that through interactive designs tailored to children's cognitive characteristics, cognitive barriers can be broken down, and the concept of “respecting differences and embracing diversity” can be deeply rooted in young hearts, laying a solid foundation for building a more harmonious and inclusive society.
The second activity we launched was aimed at a broader audience, using online channels to disseminate scientific knowledge about EB. To this end, we carefully selected social media platforms such as Douyin, Xiaohongshu, and Bilibili, which have a large user base and diverse forms of communication, to establish a platform for direct dialogue with the public. On our social media accounts, we share our team's research activities and educational short videos, transforming complex terminology into engaging and accessible language to make it easier for the public to understand. We also post updates about our team's daily work and life, helping the public gain a clearer understanding of what we do and the knowledge surrounding EB. Moreover, social media provides a larger platform to disseminate our videos more quickly, enabling more people to learn about EB and gain a better understanding of it. Through these online science popularization efforts, we have not only made more people aware of the once unfamiliar disease name “EB,” but also helped the public understand the survival challenges faced by patients, such as “daring not to embrace others” and “fearing exposure to wind and sun.” We have transformed EB from a obscure medical term into a social issue that captures public attention, laying an important foundation for future efforts to promote public participation and policy support.
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Inspiration of creating this song
This song was composed for epidermolysis bullosa, also known as the "Butterfly Baby" group. It truly presents the patients' daily intense pain (like ants crawling when getting injections or changing dressings) and their fear of not being understood. The core is to showcase their inherent courage and unextinguishable hope, directly calling on society to "stop just saying it's rare", and truly understand and accept their spiritual transformation of resistance symbolized by "breaking out of the cocoon and becoming a butterfly". The team gained an in-depth understanding of EB diseases (such as the 'COL7A1' gene) and the real lives of patients.
In our performance, we combined both English and local Chinese dialects—a popular contemporary singing approach that resonates strongly with young audiences. This bilingual and cross-dialectal style gives the song a unique auditory character, enhancing its emotional impact. We hope that, like many others, you will also be moved by our music.
Process of creating this song
Based on the image of "Butterfly Baby", our team divided the work and created the entire song by ourselves, including writing the lyrics and recording. Through our understanding of EB and hoping to encourage the Butterfly baby to write the lyrics, we only used our mobile phones to record the entire song. Due to the noisy environment, we spent a long time recording and selected the best one. The style of our entire song is relatively relaxed, pleasant and soothing. It is hoped that such warm songs can bring strength to the butterfly babies. The lyrics find a true balance among pain, courage and hope, aiming to convey strength and call for understanding through music
Lyrics
Lyrics: FlutterGene
Composer: FlutterGene
Arranger: FlutterGene
Mezy：
Mama cried when the doc said "EB"
No hugs just nee-dles in my IV
They don't feel how the band-ages stick
Peel like fi-re ants crawl on my skin
But I stand tall though my bones are shook
COL7A1 thief stole my glue
Write my name with the blood in my pen
write the truth,keeping science as my proof.
那么漂亮的眼睛呀咋个能用来哭泣Those eyes so bright, how could they ever cry?那么好听的声音呀咋个能用来叹气That voice so sweet, how could it ever sigh?
你要征服世界我们会把你捧手心If you wanna conquer the world, we’ll hold you high
你的每一次呼吸都藏起勇敢的印记Every breath you take hides a mark of courage.
也许成长路上 要多费点力气Growing up’s a climb, gotta put in that fight
但你眼底的光 一直亮得很清晰But the light in your eyes stays blazing bright.
Eloise：
Spread your wings and prepare to fly
For you have become a butterfly
Justin：
Making it out, has been a dream, unrealistic fantasy
How can i be, visionary, theres no cure out there for me
I’m gonna make things worth it, even without me perfect
Nevertheless, my life is not just a mess, it’s just work in progress
Life can be tough but you will keep your head up homies will show you some love
Time is up I know you never back up god will help from above
Once you fought out of this misery everyone in disbelief
People will spot you’re not ordinary your rise ain’t temporary
Cary：
医生说名字叫EB 爸妈眼里是奇迹 Doctors call it EB, but to parents it’s a dream.
疼痛写在皮肤里我却学会勇气Pain’s written on our skin, yet we rise, we gleam.
别再说我们罕见 只是还没的人翻页 Don’t call us rare, it’s just some haven’t seen,
每段基因的偏差 都是我们活到的注解 Every gene’s a note on how we’ve been.
我不怕脆弱的皮肤 我怕没的人理解 Fragile skin? Nah, that don’t make me scared, It’s when no one understands, that’s hard to bear.
但你们看到我 那就是我们改变的一页 But when you see me shine, that’s a page we’ve changed, Flipping the story, rewriting the range.
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Conclusion
In conclusion, this song, crafted with heartfelt dedication for children with epidermolysis bullosa ("Butterfly Babies"), stands as a poignant fusion of empathy and purpose. Grounded in deep research into the realities of EB—from the genetic underpinnings like the COL7A1 gene to the daily struggles of pain and misunderstanding—the team’s self-created work, spanning lyrics to mobile-phone recordings, captures the delicate balance between suffering, courage, and unyielding hope. Despite the challenges of a noisy recording environment, our commitment yielded a warm, soothing melody that transcends technical limitations, aiming to uplift these children while issuing a heartfelt call to society: to move beyond labeling their condition as "rare" and instead embrace their remarkable resilience, symbolized by the "breaking out of the cocoon" metaphor. Ultimately, this song is more than a musical piece; it is a bridge of understanding, a source of strength, and a testament to the power of art to amplify unheard voices and foster compassion.
Our team has developed an online mini-game called "iGEM 2048", programmed in Python. This innovative adaptation of the classic 2048 game integrates our research project while serving a dual purpose: raising awareness about Epidermolysis Bullosa (EB) - a rare genetic skin disorder - and helping combat misconceptions through engaging education.
Beyond providing entertainment, this game transforms scientific education. Unlike traditional 2048, we've replaced numbers with meaningful imagery. Players slide tiles in four directions (up/down/left/right) to merge identical images into new combinations. Each image represents distinctive EB characteristics - for instance, the butterfly tile shown in our demo symbolizes "Butterfly Children," a term affectionately used for EB patients.
As players successfully combine more tiles, they progressively unlock additional EB-related visuals. This discovery mechanism builds understanding about the condition's manifestations. Current scores are always visible in the bottom-left corner, allowing players to track their progress while learning.
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Our project combines offline education, social media, music, and gamification to raise awareness of EB among diverse audiences. By blending interactivity, storytelling, and scientific accuracy, we:
Made rare diseases understandable and relatable.
Fostered empathy, respect, and inclusion from early childhood.
Created scalable tools for continued public engagement.
This integrated approach demonstrates that science education can transcend knowledge transfer, shaping attitudes and societal understanding toward vulnerable groups.
