It’s Not Always Black and White
Did you know 1 in 10 Americans have a rare disease? That means 30 million people in the U.S. are living with a serious lifelong condition which often goes misdiagnosed or undiagnosed.
When a disease or condition affects less than 200,000 people it is considered rare. Currently there are more than 7,000 rare diseases worldwide, many of these conditions are serious or life-threatening, and only 5% have an available treatment option.
In 2008, Rare Disease Day was established to raise awareness for unknown or neglected illnesses and improve access to treatment. Though rare diseases may be overlooked, for the person affected it presents a real threat.
Rare Disease Progress
New rare diseases are discovered each year and the exact cause for many remains unknown. 80% are genetic in origin and others are thought to result from toxic or environmental conditions. It can take doctors years to figure out what’s going on due to limited data, lack of awareness, and a poorly defined diagnostic criterion. Even when a rare disease diagnosis is made, therapeutic options are limited.
Over the years we have seen significant progress in the development of targeted treatments for rare diseases. In 1983, The Orphan Drug Act (ODA) was passed to encourage drug companies to develop medications for rare diseases and for over 4 decades has paved the way for progress and innovation. Prior to 1983 there were only 38 drugs approved to treat rare diseases. Since the passage of the ODA more than 600 new rare-disease drugs and biologics have come to market to help millions live healthier lives.
Although there has been great success, there are still thousands of rare diseases with no approved treatment options and insufficient support. Dedicated advocacy groups, disease-specific organizations, and industry partners have come together to empower patients, provide insightful information, and help ease the financial burdens associated with rare diseases.
Medvantx and Rare Disease Day
Rare Disease Day is celebrated annually on the last day of February (28th or 29th in leap years). Over the years, observance has grown globally to help raise awareness, improve access to treatment and provide sufficient social and medical support to individuals with rare diseases and their families.
Medvantx is proud to help support patients nationwide and provide access to therapy for those who need it most. We strive to connect patients, providers, and healthcare organizations to improve lives through service and technology. Although there are limited rare-disease treatment options available, we are proud to have imperative partnerships which allow us to dispense over 30 different products with orphan drug designation and approval.
On February 28th, join Medvantx and the rare disease community to help bring awareness to the 300 million people living with a rare disease worldwide. Show your support and wear green, pink, blue, or purple (the official rare disease colors) or join the global chain of lights and illuminate your home to help bring attention to rare disease. By working together, we will help strengthen the impact made and shine a light on the rare disease community.