The noted Swiss painter Paul Klee once said, “Art does not reproduce the visible; rather, it makes visible.”

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There are 30 million people in the United States living with a rare disease, about half of them children. There are 7,000 different rare diseases with less than 5 percent having a treatment.

Despite the many advances in science and medicine in the 21st Century, people living with a rare disease rarely benefit from these advances. With an average diagnosis time of 8 years and few specialists, patients living with a rare disease suffer physically, emotionally and financially in a way that people with more common health conditions do not.

So how do we shine a light on the unique battle of people living rare? Art. Art not only leaves a powerful and lasting visual imprint, but creates a unique connection for the viewer. Art makes us visible. 

Ava

Ava suffers from Achondroplasia dwarfism, in which indivuals typically have short arms and legs, an enlarged head and an average-sized torso.
Artist: Robin Beckwith

Case

Case suffers from Hunter syndrome, an enzyme deficiency resulting in abdominal hernias ear infections. The disorder eventually develops into decreased cardiac function as heart valves thicken, distending of the stomach as the liver and spleen grow larger, as well as limited lung capacity and motion, and progresses to delayed development, mental retardation, and progressive loss of function.
Artist: Charlie Hall

Megan

Megan suffers from 18q- syndrome, which is caused by a chromosome deletion and results in birth defects as well as delays in development.
Artist: Megan Pugh

Austin & Max

Austin and Max suffer from Duchenne muscular dystrophy, a form of muscle dystrophy in which individuals experience frequent falls, trouble getting up or running, a waddling gait, big calves and learning disabilities.
Artist: Dan Lake

Kylie

Kylie suffers from Pompe disease, an enzyme deficiency genetic disorder resulting in cardiomegaly, hypotonia, cardiomyopathy, respiratory distress, muscle weakness, feeding difficulties and weight faltering.
Artist: Sara Breslin

Noah

Noah suffers from Gaucher disease, an accumulation of fatty substances in cells and certain organs, and is characterized by bruising, fatigue, anemia, low blood platelets and enlargement of the liver and spleen.
Artist: Ian Mohon

Ashlyn

Ashlyn suffers from Sturge-weber syndrome, a congenital neurological and skin disorder associated with port-wine staining of the face, glaucoma, seizures, mental retardation and cerebral malformations and tumors.
Artist: Wolfgang Widmoser

Miriam

Miriam suffers from Moebius syndrome, a neurological disorder characterized by weakness of multiple cranial nerves, resulting in facial paralysis and an inability to move the eyes from side to side.
Artist: Lori Jeremiah

Benjamin

Benjamin suffers from Congenital hyperinsulinism, a congenital disorder that causes individuals to have abnormally high levels of insulin, resulting in hypoglycemia.
Artist: Nina Raskin

Noah & Laine

Noah and Laine suffer from Batten disease, a fatal autosomal neurodegenerative disorder beginning in childhood, characterized by loss of sight, seizures, mental impairment, decreased speech and motor skills and eventually leads to dementia and death.
Artist: Dan Lake

Guiliana

Guiliana suffers from Apert syndrome, a genetic disorder characterized by the premature fusion of certain skull bones, preventing the skull from growing normally, affecting the shape of the head and face.
Artist: Vivian McNeeley

Eliza

Eliza suffers from Sanfilippo syndrome, a metabolism disorder in which the body cannot properly break down certain sugar molecules, leading to slow development, behavioral problems, dementia and progressive motor disease.
Artist: Ian Mohon

Vanessa

Vanessa suffers from Usher syndrome, a disorder that leads to deafblindness, resulting from hearing loss as well as retinitis pigmentosa, an eye disorder causing visual impairment.
Artist: Vivian McNeeley

Dustyn

Dustyn suffers from Glutaric aciduria type 1, an inherited disorder in which the body is unable to break down certain amino acids, which may result in spasms, jerking, rigidity, or decreased muscle tone and muscle weakness.
Artist: Tatiana Roulin