February 28 Is Rare Disease Day

by Sokolove Law

On February 28, patients, families, caregivers, researchers, health professionals, policy makers, patient advocates, and other organizations around the world will be participating in Rare Disease Day. Since its launch in 2008, there have been more than 1,000 Rare Disease Day events worldwide.

“Join Together for Better Care” is the theme for 2014. By bringing people together to share knowledge and resources, awareness of rare diseases and their devastating effects can increase. Many patients feel alone and helpless, with some not having access to treatment due to the rarity of their disease. A hope is that this annual effort will help to find ways to provide patients with better care, and improve support for those who are suffering.

Mesothelioma: A Rare and Incurable Cancer

Mesothelioma is one of the more than 6,800 rare diseases that affect Americans. It is an incurable cancer, and there are about 3,200 new cases of mesothelioma each year in the United States. The only known cause is exposure to asbestos. It can take decades for symptoms of mesothelioma to appear, so it has often spread significantly by the time it is diagnosed.

Participating in Rare Disease Day

If you or a loved one has been diagnosed with mesothelioma, there are many ways to participate in Rare Disease Day and show solidarity with others who are suffering:

  • Add your photo on the Rare Disease Day site
  • Tell your story in writing or through a video
  • Share information to help raise awareness
  • Join the conversation on Facebook, Twitter, YouTube, and Flickr
  • Find a patient organization in your area, or add yours to the map

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