February 29th is Rare Disease Day. Rare Disease Day takes place every year on the last day of February. This year’s theme is “Patient Voice” and is meant to emphasize how important it is for patients to speak out about their conditions. Rare Disease Day is a global initiative but in the United States it is sponsored by the National Organization for Rare Disorders (NORD).
The goal of Rare Disease Day is to raise awareness about diseases that many people haven’t heard of but that continue to impact the lives of patients around the world.
What is a Rare Disease?
Every year in the U.S., about 3,000 new cases of mesothelioma are diagnosed.
In the United States, the definition of a rare disease is any disease affecting less than 200,000 Americans. According to National Institutes of Health (NIH), there are about 7,000 rare diseases in the U.S. and they affect almost 30 million Americans.
Diagnosing and Treating Rare Diseases
Rare diseases are difficult to diagnose and treat. The more rare a disease is, the less likely that any given doctor has had experience with it. In cases where a doctor has not seen a certain disease, he or she may not be able to give a precise diagnosis or provide the best treatments.
The most important step for patients suffering from a rare disease like mesothelioma is seeking out an experienced specialist. While the average doctor has little to no experience in diagnosing or treating mesothelioma, a specialist focuses much of his or her time and energy on mesothelioma.
For mesothelioma and other rare diseases, approved treatments are hard to come by. Clinical trials are one of the best ways to gain access to new and innovative treatments. These trials are run by specialists and experienced researchers and offer patients the specialized help they need.
Finding Help and Hope
Seeking out a disease specific organization can help rare disease patients in many ways. NORD is an umbrella organization but there are many disease specific organizations around the country. Mesothelioma Guide aims to connect mesothelioma patients with the specialized resources that they need to fight their disease.
How Mesothelioma Guide can help:
- Emotional support and community: Often, it is difficult for patients to feel a sense of community when they are dealing with a rare disease like mesothelioma. Our site hopes to serve as a reminder to these patients that they are not alone. We can help connect you to support groups filled with patients and families dealing with the same disease.
- Information and experience: Our patient advocates know about mesothelioma and are experienced in helping people deal with it. They are dedicated answering questions that mesothelioma patients may have about facing their condition.
- Find financial resources: Rare diseases often come with a big financial burden. Unfortunately, less awareness also usually means less donations. However, there are many different financial resources and support available to mesothelioma patients.
- Connections to specialists and research: Mesothelioma Guide can help connect patients to the best specialists in the country. We also stay up to date on research and clinical trials for patients to participate in.