Rare Disease Day 2014: Join Together for Better Care

Rare Disease Day 2014 There are more than 6,800 rare diseases that affect an estimated 25-30 million Americans. Although these diseases don’t occur often, they can have serious repercussions for the people living with them. Some rare diseases are hereditary, and others are due to environmental factors.

Mesothelioma: A Rare and Incurable Cancer

Mesothelioma is one of the rare diseases that are related to environmental factors. The only known cause of this deadly disease is exposure to asbestos. There are 3,200 people diagnosed with this aggressive and incurable cancer each year in the United States. Many of those diagnosed are not even aware that they were exposed to asbestos at their jobs or in their day-to-day lives. Symptoms of mesothelioma can take decades to appear. So in many cases, by the time they are diagnosed, victims may not have long to live.

Rare Disease Day, February 28, 2014

Today is Rare Disease Day, a worldwide event that was started in 2008 by EURODIS, a non-governmental alliance of patient organizations and individuals who are active in the rare disease field. Over the last six years, this special day has inspired more than 1,000 events — all with the goal of raising the public and policy makers’ awareness of rare diseases.

According to EURODIS, the day has “notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.” This year’s theme, “Join Together for Better Care,” focuses on bringing everyone with, working in the field of, or creating policies for rare diseases out of isolation to work together in hope and solidarity.

SAMPLE CTA

How to Participate in Rare Disease Day

More than 80 countries are expected to participate in Rare Disease Day today. If you or a loved one is suffering from mesothelioma or another rare disease, here are 6 ways to participate in Rare Disease Day 2014:

  • Become a friend
  • Raise and join your hands
  • Tell your story
  • Download communications material
  • Join the conversation on social media
  • Organize an awareness-raising activity

Substantiation:

  • http://www.rarediseases.org/rare-disease-information/rare-diseases
  • http://rarediseases.info.nih.gov/files/Rare_Diseases_FAQs.pdf
  • http://rarediseaseday.org