Check-In: Rare Disease Day is February 29th!

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Question:

Jonnie Korinko (COPDF Manager of Public and Professional Education)
Jonnie Korinko (COPDF Manager of Public and Professional Education) 10 months ago

A disease is rare when it only affects a small portion of the population. Even though each disease may be rare on its own, living with a rare disease is, in fact, quite common. About 1 in 10 Americans are affected by a rare disease. Unfortunately, most of these conditions do not have any treatments available. People living with rare diseases often find it difficult to get a diagnosis and treatment plan that works for them. This is due to the limited research and treatment options available for rare diseases.

If we learn more about rare diseases, we can better support people living with these conditions. Rare diseases that affect the lungs and contribute to COPD include:

  • Alpha-1 Antitrypsin Deficiency (AATD): a cause of emphysema that can run in families.
  • Non-Cystic Fibrosis Bronchiectasis: a condition that can develop in people with certain lung infections. It can cause a lot of mucus in the lungs.
  • Non-tuberculous mycobacterial (NTM) lung diseases: lung infections caused by germs called “mycobacteria”.
  • Lymphangioleiomyomatosis (LAM): a genetic condition that causes smooth muscle growth in the lungs. This makes it hard for people living with this condition to breathe in and out.

People living with rare diseases face similar challenges. Rare Disease Day was created in 2008 to bring awareness to these conditions. It is celebrated on the last day of February each year.

Help bring awareness to Rare Disease Day by sharing your story or reason for caring about rare diseases. Make sure to use #ShareYourColors and #RareDiseaseDay on social media to show your support and raise awareness for these conditions.

More information on Rare Disease Day can be found at www.rarediseaseday.us or the global website www.rarediseaseday.org. Check out other ways to get involved here!

Check-In: Rare Disease Day is February 29th!

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It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.