Rare Disease Day® and Sickle Cell

There’s a day to recognize rare diseases like sickle cell disease!

What is a rare disease?

In the US, rare diseases are defined as conditions that affect less than 200,000 people. The definition of rare disease varies from country to country.¹

Is Sickle Cell a rare disease?

Although millions of people around the world live with a type of sickle cell disease, it is still considered a rare condition. In the US, there are an estimated 100,000 people who live with sickle cell disease.²

Sickle cell disease is an inherited genetic disorder. The genetic mutation causes red blood cells in the body to change shape, causing anemia or limiting blood flow. Screening for the disease in newborns started in 2006, which has helped to increase awareness of sickle cell disease, including sickle cell anemia, HbSC, sickle cell thalassemia, HbSD, HbSE, and HbSO.^{2, 3}

When is Rare Disease Day®?

Rare Disease Day® is on the last day of February. This year Rare Disease Day® is on February 28th, 2021. However, every 4 years it’s on February 29th - a rare date!³

When did Rare Disease Day® first start?

Rare Disease Day® was started in Europe in 2008 by the European Organization for Rare Diseases and the Council of National Alliances. The day is now hosted and sponsored by the National Organization for Rare Disorders (NORD) in the United States.^{4, 5}

What’s the purpose?

Over 300 million people live with one of 6,000 rare diseases worldwide, but awareness about many of these conditions is limited. It’s important to increase awareness among the general public, as well as in the fields of research, medicine, and government to improve treatment options and policies impacting those living with or caring for someone with a rare disease.⁵

As an internationally recognized event that acknowledges rare diseases like sickle cell disease and cystic fibrosis, Rare Disease Day® helps to improve the lives of people living with these conditions.

Organizations and societies supporting those affected by rare diseases take this opportunity to work together to improve education and support for these diseases. You can find many local, global, and virtual events that are hosted to accomplish these goals at rarediseaseday.org.

I have sickle cell. How can I participate?

Share your story about living with a rare disease! Talk to friends and family or post on your social media platforms to help people in your community learn about sickle cell.

If you’re not comfortable sharing your own personal experience, you can still participate in Rare Disease Day by educating others about sickle cell and dispelling myths.

Supporting individuals and organizations with sickle cell or other rare diseases is also an important part of participating in Rare Disease Day®. This can be as simple as liking or following blogs and organizations on social platforms so they can spread awareness and educate others about the condition.

Most importantly, listen to your body and take care of yourself.

I don’t have a rare disease. Can I still participate?

Definitely! Reach out to a friend or family member. Let them know that you’re thinking about them and ask if there’s anything you can do to support them. Educate yourself about the rare disease that your loved one is experiencing. You can also educate others by sharing resources about the sickle cell disease and support rare disease blogs and organizations.

Looking for more ways to participate? You can also consider donating blood to help individuals living with sickle cell disease. Did you know that blood donations are the most common form of treatment for sickle cell disease and anemia patients in the US?