Rare Disease Day Showcases Uncommon Cancers, Autoimmune Conditions and More

Awareness // February 28, 2017

February 28 is Rare Disease Day – a day on which patients, advocates, and organizations across the world band together to share awareness about lesser known disorders. This includes rare cancers like mesothelioma, autoimmune disorders, genetic conditions, and many other others medical conditions that affect smaller numbers of people.

According to the Rare Disease Day website, a rare disease is one that affects fewer than 200,000 Americans at any given time. Since only 3,000 cases of mesothelioma are diagnosed each year, and most mesothelioma patients have a life expectancy of only 1-2 years, this aggressive and devastating cancer definitely fits the definition of a rare disease.

As such, the Mesothelioma + Asbestos Awareness Center is participating in Rare Disease Day by spreading the word about the dangers of asbestos and its connection to the development of cancer. We also want to make sure people know about the various treatment options – including new and emerging treatments like immunotherapy, gene therapy, and cryotherapy – as well as the struggles associated with research and development problems.

Mesothelioma as a Rare Disease

Given how few people are diagnosed with mesothelioma each year, it definitely fits the definition of a rare disease. But practically speaking, what does that mean?

For one thing, it means that many people simply are not aware the disease even exists. Sure, some people see the late-night commercials, but very few people actually know that mesothelioma is a preventable form of cancer caused by exposure to asbestos, a deadly carcinogenic substance that has been used in everything from construction materials to automotive parts to home decorations and even toys! Many people also don’t know that mesothelioma has a poor prognosis, with only a handful of people living more than a couple years after diagnosis.

Another result of mesothelioma being a rare disease is that it has much less research than other types of diseases – even than other types of cancers specifically! With fewer people developing the disease, it leaves only a small pool of patients who can participate in clinical trials, which means it takes doctors and researchers longer to find new treatments and learn more about the cancer. Fewer studies about the effectiveness of emerging treatments also means the FDA is slower to approve those treatments for broader use.

Finally, the lack of awareness around mesothelioma means that many people are also not aware that asbestos is still a danger. Many people think that asbestos is banned in the United States, but not only is it still present in many older buildings and consumer products, it can even be found in some types of new products being made today. Given how dangerous asbestos is, it’s important to bring awareness about the diseases it causes, even if those diseases are rare.

How to Participate in Rare Disease Day

There are a number of ways you can join us during Rare Disease Day:

  • Tweet us or share a story on Facebook about mesothelioma or another rare disease that has affected you and your family.
  • Donate to an organization that supports rare diseases.
  • Share this blog post with family, friends, and others who may be interested in supporting Rare Disease Day.