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The Centers for Disease Control and Prevention found that, as of 2012, 117 million American adults (about half of the US adult population!) had one or more chronic health conditions. The term “chronic condition” can refer to a wide variety of ailments, including, among others, heart disease, stroke, cancer, diabetes, obesity, and arthritis. With this in mind, it is important to point out that the specific conditions mentioned here all have two major things in common:

  1. There is widespread awareness of these conditions
  2. There is very visible and accessible support available for patients with these conditions

For example, it would not be strange to see advertisements and hear public service announcements related to heart health. These messages often contain references to support organizations that patients and families can contact to help cope with and treat heart disease. A simple Google search for “heart disease support” reveals numerous sources of information: Mended Hearts, American Heart Association, WomenHeart, and many support groups—all related to heart disease.

Something that doesn’t come up very often, however, is the topic of rare diseases. Statistics presented by Global Genes state that there are approximately 7,000 different types of rare diseases and that about 30 million people in the US are living with rare diseases (almost 10% of the population). Awareness and support for these numerous rare diseases aren’t always easy to find, but there are those who are trying to increase awareness of such conditions.

Since 2008, the last day of February has been known to many as Rare Disease Day, and the day has been used for advocacy and awareness campaigns for rare diseases. In addition, The National Organization for Rare Disorders (NORD) is a rich source of information on rare diseases where patients and their families can seek out general information, support groups, and financial support. It is even possible to start a new organization related to a rare disease.

Through all of this, the thing to remember is that anyone suffering with a rare disease can find support. No one has to deal with such an ailment alone because there are always others willing to help.

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