By April Kapu, DNP, APRN, ACNP-BC, FAANP, FCCM, FAAN
February 28 is Rare Disease Day, a global movement that highlights rare diseases and works toward equity in social opportunity and health care, including increased access to diagnoses and therapies for those who are living with a rare disease.
Let’s all do our part to learn about rare diseases! Here’s what you should know:
- A disease is considered rare when it affects fewer than 200,000 people in the United States (U.S.) and 1 in every 2,000 people in Europe.
- There are 400 million people worldwide and 25 million people in the U.S. living with a rare disease.
- There are about 7,000 rare diseases.
- Fewer than 5% of rare diseases have a treatment approved by the U.S. Food and Drug Administration.
- Nurse practitioners (NPs) play a vital role in caring for patients with a rare disease by removing barriers to evaluation and prioritizing communication between the patient and their care team. NPs provide accessible, affordable and high-quality care to patients with rare diseases.
Rare Disease Day provides an opportunity to advocate for rare diseases as a human rights priority at local and national levels. Increased awareness may create new opportunities to improve the research, diagnosis and treatment of rare diseases. If you’d like to be involved, begin by educating your friends, family and community about rare diseases or participating in one of this year’s local Rare Disease Day events. To identify rare disease early, be sure to schedule annual visits for you and your family with your NP or health care provider.