Despite the Name, Rare Diseases are Not So Rare

If you are not one of the millions of patients and families with a rare disease, you may think they have a low social or economic impact. On the contrary, collectively, they affect more than 350 million patients globally, many of whom are children. Death or reduced lifespan is a common outcome for patients with a rare disease, and rare diseases cause 28% of all neonatal intensive care unit deaths. The signs and symptoms vary between patients and are shared among rare diseases, so it can take up to 8 years to get an accurate diagnosis. Meanwhile, families struggle to care for their loved one with the illness while meeting their day-to-day obligations to work and each other. The stories of people living with a rare disease are elevated annually during February and on Rare Disease Day, the last day of the month. Knowledge starts with learning the definition of a rare disease and understanding how it applies to the legion of conditions and ailments represented by this community.

Learn more in my post at Rare Disease Day. See the source of my facts and learn more from these patient advocacy group sites:

Global Genes

National Organization for Rare Disorders

Rare Disease Day