The Art Gallery For Rare Conditions
In Visible Resonance
Portrait Drawing of Rare Diseases
Location: The First-Floor Lobby of the Aoxiang Building, International Department, South China Normal University Affiliated High School
Forward
People may think rare diseases only affect a minority of the population. In reality, the total number of people affected by rare diseases is up to 300 million.
Awareness of rare diseases is crucial because it connects people affected by them to earlier medical care and helps them receive greater understanding from others.
We hold the Portrait Drawing of Rare Diseases in school to increase people's awareness of rare diseases by visulizing the symptoms of rare diseases through vivid art with scientific explanation.
Now, we invite you to immerse in the the gallery of rare diseases.
Breaking the Misconception: Tourette Syndrome
Creator: Rare not Alone organization
Children with Tourette syndrome (which is not a rare disease) typically experience two types of involuntary tics. One type is motor tics, such as shrugging the shoulders, jerking the head, or making facial grimaces. The other type is vocal tics, including throat clearing, sniffing, or coughing. These are exactly the symptoms depicted in the artwork. Because these tic behaviors are uncontrollable, children with Tourette syndrome often face significant challenges, such as teasing or ridicule from others. This is precisely why greater public awareness and understanding of Tourette syndrome is so important.
Breaking the Misconception: ADHD
Creator: Rare not Alone organization
Inspired by the “archipelago of emotions” associated with ADHD, the artwork portrays a richly layered and constantly shifting inner world—vivid in color and soft like flowing streams. Yet at times, one may become deeply entangled within it, unable to break free, much like blended clay and tangled yarn balls woven tightly together.
Make the Rare Visible: Angelman Syndrome
Creator: Rare not Alone organization
This artwork portrays children living with a rare condition known as Angelman syndrome. Children with Angelman syndrome are often characterized by frequent laughter and an unusually cheerful demeanor, creating a striking contrast with the severity of the condition they endure. At the same time, they may experience recurrent seizures and developmental delays, which can significantly affect their quality of life.
The inspiration for this piece lies in this contrast: even when smiles appear on the surface, the inner pain remains unseen. By depicting the children gathered together, the artwork conveys a central message—that rarity is not synonymous with loneliness. It calls on us to offer greater care, understanding, and compassion to children with Angelman syndrome, often affectionately referred to as “angel babies.”
Make the Rare Visible: Amyotrophic Lateral Sclerosis
Creator: Rare not Alone organization
The artwork uses a powerless body and the imagery of ice to depict the physical immobility experienced by individuals with amyotrophic lateral sclerosis (ALS). Although their minds remain clear and fully conscious, their bodies lose the ability to respond or move. This cruelty is conveyed through the figure’s profound sense of helplessness and the surrounding ice, as if the body itself has been frozen in place.
Make the Rare Visible: Tuberous Sclerosis Complex
Creator: Rare not Alone organization
Depigmented skin patches and facial angiofibromas are transformed into artistic patterns, while the star-like nodules on the skin and organs become vibrant imprints within the painting. Amid these intricate textures, the figure continues to smile, expressing the courage and resilience to live alongside tuberous sclerosis complex.
Make the Rare Visible: Tuberous Sclerosis Complex
Creator: Rare not Alone: organization
Tuberous Sclerosis Complex (TSC) is an autosomal dominant neurocutaneous disorder that can lead to the development of benign tumors in multiple organs. Patients may exhibit abnormal patches and nodules on the skin. In this artwork, the side profile of a woman with her eyes closed serves as the central figure, while dots and intricate patterns symbolize the skin lesions associated with the condition. The warm-toned background reflects a hopeful and positive mindset, conveying resilience and optimism in the face of disease.
Make the Rare Visible: Osteogenesis Imperfecta
Creator: Rare not Alone organization
The girl in the painting lives with “Porcelain Doll Disease” (Osteogenesis Imperfecta), a condition marked by fragile bones. The shattered, mirror-like imagery conveys the delicacy and vulnerability of her skeletal structure. Seated in a wheelchair, she wears a blue-and-white striped shirt, her dark hair gently falling to the side. A trace of quiet sorrow lingers in her eyes as one hand rests upon her chest, revealing a sense of stillness, endurance, and the unspoken hardship she carries amid illness.
Make the Rare Visible: Osteogenesis Imperfecta
Creator: Rare not Alone organization
This artwork takes Osteogenesis Imperfecta (OI) as its central theme. The fractured textures symbolize the patients’ fragile, easily broken bones—delicate like glass, shattering at the slightest touch. The child depicted in the painting carries a sense of helplessness in their gaze, yet the colors on the face suggest an inner longing for strength and growth. Despite physical fragility, the work conveys a quiet pursuit of resilience and the enduring power of life.
Make the Rare Visible: Epidermolysis Bullosa
Creator: Rare not Alone organization
Epidermolysis Bullosa (EB) is a group of rare inherited skin disorders in which the skin and mucous membranes—such as those of the eyes, mouth, and esophagus—can develop blisters or blood-filled blisters after even the slightest friction. In the painting, the infant is portrayed as a butterfly-like little sprite. Butterflies are beautiful yet fragile; a gentle touch may damage their wings, much like the delicate skin of individuals living with EB. The sprite’s peaceful, sleeping posture conveys a heartfelt wish that patients may live in comfort, free from pain and suffering. The blue background symbolizes calmness and healing, while the soft pink frame surrounding the figure resembles a gentle circle of protection, representing the care, compassion, and guardianship offered by others.
Make the Rare Visible: Albinism
Creator: Rare not Alone organization
The visual features of silver hair and red eyes correspond to impaired melanin synthesis caused by tyrosinase deficiency. Through the use of light and shadow, the artwork reflects clinical ophthalmic manifestations such as photophobia and visual impairment. At the same time, it reveals the distinctive beauty of individuals with albinism and their sensitivity to the gaze of the outside world, inviting understanding, empathy, and inclusion.
Make the Rare Visible: Kallman Syndrome
Creator: Rare not Alone organization
The faded adolescence serves as a metaphor for arrested sexual development caused by insufficient secretion of gonadotropin-releasing hormone (GnRH), while the absence of olfactory imagery subtly points to anosmia—a distinctive yet often hidden pathological feature of Kallmann syndrome.
Make the Rare Visible: Gorlin Syndrome
Creator: Rare not Alone organization
This artwork is inspired by reflections on Gorlin syndrome. Gorlin syndrome is a rare genetic disorder, often associated with recurrent skin depressions and various physical abnormalities. In the painting, the figure is depicted removing one eye, symbolizing the strabismus commonly seen in individuals with Gorlin syndrome. The figure’s head appears noticeably larger than average, reflecting the characteristic macrocephaly associated with the condition. Finally, the numerous visible indentations across the body represent the skin depressions that are a hallmark of Gorlin syndrome.
Make the Rare Visible: Pulmonary Alveolar Proteinosis
Creator: Rare not Alone organization
The bubbles evoke the suffocating beauty of Pulmonary Alveolar Proteinosis (PAP). Air and fluid intertwine within the lungs—where the flow of breath should be free, a chain of fragile bubbles rises instead, obstructing normal gas exchange. Through poetic imagery, the painting transforms the “burden of breathing” into a delicate yet haunting metaphor that lingers in the viewer’s mind.
Epilogue
Whether you are a student, a teacher, or a visitor, we hope that as you leave this exhibition, the presence of rare diseases will continue to linger in your mind.
When we encounter individuals living with rare diseases, may we offer them greater care, empathy, and understanding.
When we meet those who may be affected by a rare disease, may we encourage them to seek further examination and diagnosis.
Make the Rare Visible,
Let the rare no longer be alone—this is the true meaning of this exhibition.