Faint sobbing echoes in the doctor’s office, emanating from two adults clutching each other. A boy sits on the examination table, shock lining his face as he realizes that he may never see again. His young sister stands to the side, wondering why tears were running down her family’s faces, like leaves plummeting in the autumn. A doctor shifts uncomfortably on his feet, fingering the bright white sheet on his clipboard. The boy has been diagnosed with a deadly disease. It is neither retinoblastoma cancer, nor fungal keratitis. It is Coat’s disease.

Coat’s disease is a terrible illness that results in blindness for the victim. There are many other sicknesses that are considered rare, which are all as harmful as Coat’s disease. One example is leukodystrophy, which are a group of illnesses that weaken the nervous system. Another is alkaptonuria, which causes a weakening of cartilage and bones. This can result in painful movement in the joints at an early age. Unfortunately, these horrible diseases have no effective treatments, since they are considered rare. The research for rare diseases should be supported and funded.

A rare ailment is classified as a sickness that affects less than 1 in 200,000 Americans. Nearly 1 in 10 Americans, or about 25 to 30 million inhabitants of the United States, suffer from these types of infections. There are about 6,000 of these illnesses in the world, and unfortunately, there are only cures for 200 of these diseases. Therefore, millions of victims are undiagnosed and struggle to live. The millions affected by uncured sicknesses should be able to live comfortably with treated diseases.

Most people do not know about rare diseases or how severe they are. This ignorance leads to many incorrect ideas. It is a common belief that it is useless to research rare diseases because they only affect few people. Furthermore, people think that researching rare ailments and finding effective treatments would only affect the people who are diagnosed with the rare illness. However, these misleading assumptions are incorrect. Researching rare diseases can benefit many people, not only people with rare diseases.

The research of rare diseases can spark many new advantages. For example, successful research can provide new information for finding treatments for more common diseases, such as cancer and sickle cell anemia, according to the director of the National Institutes of Health, Dr. Francis S. Collins. Furthermore, the discovery of an effective treatment would not only affect a few individuals. Since over 25 million Americans are influenced, thousands are benefited from a cure of one disease. Supporting rare diseases would help bring relief to those directly affected by them and help thousands of others who benefit indirectly from the research, such as people affected with hereditary diseases.

Many problems are faced by people diagnosed with a rare disease. According to the website rarediseaseday.us, affected people feel isolated and upset, since not all health care provides aid for their conditions. Since health cares cannot provide financial assistance, these people struggle to purchase necessary equipment to soothe their ailments temporarily on top of typical financial problems, such as bills.
Furthermore, they have trouble finding doctors or hospitals that will treat their disease, since their diseases are not well known. People with a rare disease are fearful that their undiagnosed condition will remain untreated for a long time.

Luckily, many actions have been taken to find out more about rare diseases. The National Institutes of Health has completed the Human Genome project. It has been used to discover new information about illnesses caused by genetic mutations, such as Lamellar ichthyosis, an ailment that causes tight, painful skin. Also, Obamacare, a government program designed to provide affordable insurance for most Americans, extends its aid to people with rare diseases. One such person who has benefited from this program is Megan Barron, who has epidermolysis bullosa, which is the scarring and blistering of the skin and internal organs. Obamacare allowed her insurance to help her and purchase bandages and creams for her condition. Research for rare diseases should be funded so similar projects can be started to help people.

Researching rare diseases can provide endless benefits for everyone, including people not directly affected by the sickness. Convince others to support rare diseases. Donate to organizations that fund research for rare diseases, such as the Jack McGovern Coats Disease Foundation. Offer words of support to friends or family who are going through the terrifying ordeal of dealing with an undiagnosed condition. Performing these simple actions can help give hope to others suffering from diseases as serious as cancer or HIV/AIDs, but not as well known.