We live in an incredible world. We can travel around the planet in a matter of hours and can put people and robots so far in space that we mean “astronomically far” quite literally. Many of us carry devices that have a nearly constant link to endless information. Even the fabled ancient library of Alexandria didn’t have as much information as we do now. Medicine has advanced so that simple vaccinations given to children can protect them from many terrible diseases. In spite of all this, we have to remember that we also live in a time that many rare diseases aren’t yet curable.
Information about rare diseases
In the United States, we classify a rare disease as something that affects fewer than 200,000 Americans at one time. Approximately 25 million Americans live with a rare disease. Some diseases are comparably mild and others are completely disabling, requiring around the clock care. It’s tragic that we carry a wealth of knowledge on a smartphone, but we aren’t quite sure what causes rare diseases.
Since Congress passed the Orphan Drug Act of 1983 to fund the creation of pharmaceuticals for rare diseases, companies have more reason to find cures. Research shows that many rare diseases seem to be passed from parents to children, possibly pointing to a genetic cause. Promising treatments like mitochondrial replacement are on the horizon, and progress continues to help find cures and develop treatments.
The Rare Disease Day organization
The last day of February is Rare Disease Day, and RareDiseaseDay.org is working to spread awareness for the 6 thousand (and counting!) rare diseases we know of. Their 2015 theme is “Living With A Rare Disease” and focuses on the millions of people in the U.S. with a rare disease, as well as support for all their friends and family. While called rare, these diseases affect over 25 million people in the United States alone. Please click here or the poster above to find out how you can help.
We’d like to help too
At Summit Disability Law Group, we primarily handle cases that have to do with disability and Social Security. Many people who have a rare disease can no longer work and some need care their entire lives. The Social Security Administration was set up to help Americans when they can no longer work. We’d like to help answer any questions you have about your Social Security application and the road to getting your benefits. While you may have rights to disability compensation, the SSA turns down a large portion of the applications they receive. The good news is that you have a better chance of being approved for Social Security benefits with the help of a lawyer. We can help with the application process and, if necessary, present your case at a hearing for an appeal.