The Surprising Truth About Rare Diseases in America

by Sokolove Law

Being diagnosed with any type of disease isn’t something anyone looks forward to. And those diagnosed with rare diseases face an even greater uphill battle. Diseases that are more well-known, like breast cancer, AIDS, and diabetes, generally receive greater funding and public attention. Those with rare diseases fight not just for their health and their lives, but for compassion, understanding, and a higher priority in research labs around the world.

That is why today, February 29, we want to draw attention to and commemorate the 9th annual Rare Disease Day. Rare Disease Day was started by EURODIS and its Council of National Alliances in 2008 and it is celebrated on the last day of February every year. The U.S. joined this global event in 2009, and as of last year, there were over 80 countries around the world taking part. The goal of this day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.

What Is a Rare Disease?

In the U.S., a rare disease is considered to be a disease that affects fewer than 200,000 people. That number may vary in other countries. There are currently more than 6,800 rare diseases, and as a whole, they are believed to affect approximately 25-30 million out of the more than 323 million people that live in our country.

Rare diseases are sometimes referred to as “orphan” diseases. They can be challenging to diagnose and certain symptoms are often tied to other, more common conditions. If a rare disease is correctly diagnosed, many do not have cures and it can be difficult to find a medical professional who has experience in treating the disease.

Many rare diseases are inherited or caused by rare mutations in single genes. Examples of these rare diseases include:

  • Cystic fibrosis
  • Huntington’s disease
  • Muscular dystrophies

Some rare diseases, however, are the result of environmental factors. For example, mesothelioma a serious, deadly form of cancer that affects 3,200 people every year is directly caused by exposure to asbestos.

Mesothelioma and Other Asbestos-Related Diseases Are Preventable

Mesothelioma is an incredibly frustrating rare disease because it is completely preventable. Unfortunately, many people diagnosed with mesothelioma were exposed to asbestos either without their knowledge, or under the assumption that they were perfectly safe.

Before the 1980s, the dangers of asbestos — a natural-occurring mineral used in thousands of consumer products due to its strength and resistance to heat — were not widely known. The companies that manufactured these asbestos-containing products were aware of the dangers, but chose to keep that information secret for decades. Because these corporations put profits ahead of people, countless men and women have been diagnosed with mesothelioma, an aggressive, fatal form of cancer that has no cure.

Asbestos is responsible for other rare diseases, like asbestos lung cancer, and asbestosis, as well. These diseases, including mesothelioma, develop when an individual inhales very small asbestos fibers that are released into the air. Those fibers can become lodged in the person’s lungs, stomach, or heart, and cause one of these asbestos-related diseases to develop.

Support Rare Diseases: Funding, Research & Awareness

Patients suffering from rare diseases frequently feel confused, alone, and misunderstood — and no one should ever have to feel that way. Though the Orphan Drug Act of 1983, which created financial incentives for drug and biologics manufacturers to develop drugs for rare diseases, has been incredibly effective in the fight against rare diseases, there is still a lot of work that still needs to be done.

Everyone should stand up for these victims of rare diseases to ensure their voices are heard by the public, and they are able to receive funding from private and federal organizations.

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