Rare Childhood Diseases

 

In the United States, a disease is considered rare if it affects fewer than 200,000 people. There are 7,000 rare diseases, with less than 5% having an FDA approved treatment. There are no cures. Approximately 50% of people affected by a rare disease are children, of which 30% will not live to see their 5th birthday.

 

Rare Childhood Cancer

 

All childhood cancers are considered rare. There are 12 major types of childhood cancers and over 100 subtypes. About 1 in 25 children will develop cancer before the age of 20. Childhood cancer remains the most common cause of death among children in the United States.

 

Shared Experience

 

Children with rare diseases and children with cancer share several common experiences, both in terms of medical challenges and emotional, social, and psychological impacts, including frequent hospitalizations, multidisciplinary medical teams, feelings of isolation, and lack of awareness. Both groups often become symbols of hope and courage as they navigate their health journeys with immense strength, sometimes becoming advocates for others in similar situations.

 

The Beyond the Diagnosis art exhibit’s focus is children with rare diseases and childhood cancers. Artists have donated their time and talents to paint these children for this groundbreaking exhibit. This beautiful exhibit is traveling to medical schools, research institutes, hospitals, galleries, and museums around the globe encouraging the medical community to look “beyond the diagnosis” to the patient.