Rare and more common than you think

Rare diseases are not as rare as you think. A disease is called rare when it affects fewer than 200,000 people in the US. Around 30 million people in the US live with a rare disease.1

Although there are about 7,000 different rare diseases1, most of them share similar characteristics: they are often chronic, lifelong genetic conditions (72%) with childhood onset (70%).2 Most rare diseases have no cure and are associated with reduced life expectancy and decreased quality of life.4

The lack of awareness of rare diseases and lack of treatment options can make the entire experience, from diagnosis onwards, one of challenges and uncertainty. The complexities and challenges of diagnosing and managing each rare disease overlap greatly with many shared commonalities, and do not vary as much as the diseases themselves.

As we have done for the past 40 years, at Novo Nordisk, we stand by the rare disease heroes. We are driving innovation to discover new medicines and technologies to transform the way we diagnose, treat and care for people living with a rare disease. Together, we are driving change in rare disease. We are innovating to help make everyday better.

1. Genetic and rare diseases information center. What is a rare disease? [Accessed December 2022] Available at: https://rarediseases.info.nih.gov/about

2. European Journal of Human Genetics. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. [Accessed January 2023] Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6974615/

3. Editorial. Spotlight on rare diseases. The Lancet Diabetes & Endocrinology. 2019; 7(2)75. [Accessed December 2021] Available at: https://doi.org/10.1016/S2213- 8587(19)30006-3

4. Bogart KR and Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet Journal of Rare Diseases. 2017; 12:177. [Accessed June 2022] Available at: Health-related quality of life among adults with diverse rare disorders - PubMed (nih.gov)

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