Skip links

7 Facts About Rare Diseases to Raise Awareness on Rare Disease Day

Rare diseases impact individuals and families worldwide. We are honored to participate in Rare Disease Day to help raise awareness for patients living with rare diseases, their caregivers, and the healthcare providers who support them.

If you’re not familiar, Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since the start of Rare Disease Day in 2008, this day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse but united in purpose. (

The exact cause for many rare diseases or complex conditions is unknown, but the problem is typically traced to mutations in a single gene. Many of these genetic mutations pass from generation to generation. It is important to note that genetics is just one part of the cause of rare diseases. Others can be caused by infections, allergies, and environmental causes or are degenerative and proliferative. Continuing to build awareness of rare diseases is critical because 1 in 20 people will live with a rare condition at some point in their life. Despite this, there is not a cure for most rare diseases, and many go undiagnosed. However, there are specialty medications for these conditions that can help improve the lives of patients living with a rare disease.

In honor of Rare Disease Day, we are sharing some essential facts about rare diseases:

  1. A disease is considered “rare” when it affects fewer than 1 in 2000 people. (
  2. 300 million people worldwide are living with a rare disease.(
  3. Only 10% of rare diseases have an FDA-approved treatment. (
  4. Approximately 50% of people with rare diseases are children.(
  5. The average diagnosis for a rare disease takes six years and can require consultations with up to 12 specialists performing multiple tests. (
  6. The financial burden of treating a rare disease is significant, with healthcare costs 3 to 5 times greater than people without a rare disease. (
  7. 72% of rare diseases are genetic. (

We will also be sharing statistics related to rare diseases this week on our social channels. You can follow us on LinkedInFacebook, or Twitter to stay connected and share with your audience using the hashtag #RareDiseaseDay. In addition, for every like, comment, and interaction we receive on these statistics shared on social media, we will donate $1 to NORD’s RareCares® Patient Assistance Programs (up to $2,500). Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

Orsini Specialty Pharmacy is honored to be participating in Rare Disease Day. To stay updated on the latest content related to Rare Disease Day, we invite you to connect with us on LinkedInFacebook, or Twitter or subscribe to the blog.