Rare & Orphan Diseases

Overview

Rare diseases are defined as any disease or condition that affects less than 200,000 Americans. It is estimated that between 25 and 30 million Americans have a rare disease. Many patients who are affected by a rare disease often have complex medical therapies and treatments. We assist our patients through coordination of care through comprehensive services.

Some rare disease states that we service are: ​
∙ Hereditary Angioedema (HAE)​
∙ Lysosomal disorders ​
∙ Pulmonary arterial hypertension (PAH)​
∙ Phenylketonuria (PKU)​
∙ Urea cycle disorders​
∙ Among many others

Resources

Genetic and Rare Diseases Information Center
https://rarediseases.info.nih.gov/

National Organization for Rare Disorders
https://rarediseases.org/

Rare Disease Foundation
https://rarediseasefoundation.org/