Straight Talk about Mesothelioma, a blog series created by Michael T. Milano, M.D., Ph.D., a radiation oncology specialist, as a resource for mesothelioma patients and their loved ones.

According to the American Cancer Society (ACS), 1 in 5 U.S. cancer diagnoses is for a rare cancer. This is a tremendous proportion of cancers on which doctors have limited information, leaving patients and their families short of the support and treatment they need.

One of the hardest forms of cancer to diagnose is mesothelioma, a cancer caused exclusively by asbestos. Mesothelioma symptoms are easily mistaken for other cancers or illnesses and subsequently mistreated.

Advocacy organizations exist to help solve this problem. By funding and advocating for research, these organizations can better inform doctors on how to prevent, detect, treat, and perhaps even cure rare diseases. The following are key initiatives mesothelioma patients should be aware of.

Asbestos Disease Awareness Organization (ADAO)

ADAO is the largest organization dedicated to raising public awareness of asbestos-related diseases, which account for up to 15,000 deaths every year but remain poorly understood. The organization’s main goal is to prevent and treat these diseases through research, a global community of survivors, and advocacy for a global asbestos ban. Its annual conferences bring together medical and public health experts from all over the world.

Mesothelioma Applied Research Foundation

Formerly known as MARF, the Mesothelioma Applied Research Foundation is a nonprofit committed to ending mesothelioma. The organization advocates for research and educates patients and their families through its extensive resource library. MARF has so far generated $9.8 Million in grant funding to improve patients’ treatment and survival, and $15.1 Million to fund severely lacking federal research.

National Organization for Rare Disorders (NORD)

NORD is a nonprofit organization focused on improving the lives of people with rare diseases. Its database contains abundant information on more than 1,200 conditions, including mesothelioma. NORD also provides programs and services such as the Patient Assistance Program, which helps patients obtain life-saving medications, and Rare Action Network, a community of patients interested in fundraising and networking.

World Health Organization (WHO)

The WHO, a member of the United Nations Development Group, works with governments and other international agencies to build a healthier world. One way the organization strives to combat disease is by raising awareness of their causes. Its International Programme on Chemical Safety investigates asbestos-related diseases and promotes public health actions to eliminate them.

Federal Agencies

These include:

The ultimate goal of most advocacy and research efforts is to work toward prevention and cure. However, mesothelioma is a complex and relatively recently discovered disease still in early stages of investigation. By participating in these organizations’ programs, every mesothelioma patient can make a difference or find the support they deserve.