Raise Your Rare Diseases Awareness

Alli Walsh, Social Media Strategist

Raise Your Rare Diseases Awareness

Started as a European campaign to raise public awareness of rare diseases and their impact on patients and their families, Rare Disease Day has become a global phenomenon with over 80 participating countries. It is celebrated toward the end of February.

The US got involved in 2009 with a coalition of supporters including the National Institute of Health (NIH) and other government entities. 

Supplementally Speaking joins the NIH in helping raise awareness of rare diseases that may impact you, a loved-one, a friend or community member.

What qualifies as a rare disease?

According to RareDiseaseDay.us, a rare disease is any disease, disorder, illness or condition affecting fewer than 200,000 people in the US. They affect 1 in 10 Americans, or more than 30 million people, collectively. 50% of rare diseases affect children.

To look at this another way, consider that nearly 86 million Americans suffer from cardiovascular disease,1 yet there are more Americans who live with a rare disease than ALL of those who have HIV, Heart Disease or Stroke.2

How do people “get” a rare disease?

80% of rare diseases have identified genetic origins while others are the result of bacterial or viral infections, allergies and environmental causes or are degenerative and proliferative.2

How many diseases are defined as rare?

There are at least 7,000 rare diseases—and they’re very diverse in nature, making them difficult to quickly (and accurately) diagnose. What’s more, 95% of rare diseases are without an FDA approved treatment or therapy.2

What are some examples of rare diseases?

  • Acute respiratory distress syndrome (ARDS) is a type of severe, acute lung dysfunction affecting all or most of both lungs that occurs as a result of illness or injury.5
  • Half (50%) of cancers are rare, and they include brain, pancreatic, ovarian, thyroid, and stomach cancers; leukemia and lymphoma; and all pediatric cancers.1
  • Hemophilia A is a genetic bleeding disorder caused by insufficient levels of a blood protein called factor VIII, a clotting factor.5
  • Landau-Kleffner Syndrome (LKS) is a rare neurological disorder that causes a loss of language skills; usually occurs in children between ages 3 and 7.4
  • Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fail to produce enough energy for cell or organ function; it impacts about 1 in 4,000 people in the US.3
  • Narcolepsy is a neurological sleep disorder characterized by chronic, excessive attacks of drowsiness during the day, sometimes called excessive daytime sleepiness (EDS).5
  • Restless legs syndrome (RLS) is a neurologic and sleep related movement disorder characterized by an irresistible urge to move in the legs that typically occurs or worsens at rest; usually accompanied by abnormal, uncomfortable sensations.5

How can I show my support?

Visit the National Organization for Rare Disorders to learn how to take action locally. You can donate money or time through participation in an educational or running event.

References

CDC Foundation
RareDiseaseDay.us
Mitoaction.org
Boston Children's Hospital
Rarediseases.org

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