Rare Disease Day

rare-disease-dayRare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.

In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. Rare diseases include many birth defects, genetic disorders and chromosomal abnormalities.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.

To learn more about rare diseases and Rare Disease Day, click on this link.

COMMENTS (2)

  • comment-avatar
    Ileana Jara February 28, 2013

    I am a grand mother of a 2 year old boy. His brain was not developed and he is not walking and talking yet. He takes medication he needs a lot of therapy and he just gets therapy once a week.

    I would like to volunteer.

  • comment-avatar

    Hi Ileana – I’m sorry to hear about your grandson’s challenges and I hope he receives all the therapy he needs. I suggest you read all of our posts on Delays & Disabilities: Finding Help for Your Child. (Click on “Help for Your Child” in the categories section at the top of the right hand column.) New posts are added to this section every Wednesday.

    I also think your family may find some great support at our Share Your Story site: http://www.shareyourstory.org/. You will be able to connect with other families who are or have been experiencing much of what you are now.

    Sincere best wishes – Lindsay