Is Rare Disease Day (February 28th) really necessary? Absolutely. Know why? Because in the United States we have approximately 30 million people who suffer from some kind of rare disease. Basically, that means one in ten Americans suffer from an orphan or rare disorder. In Europe, there are just as many affected by rare diseases as in the U.S.
Rare Disease Day was started in Europe in 2008 by an organization called EURORDIS (The European Rare Disease Organization). It’s Europe’s version of the U.S. organization, NORD (National Organization for Rare Diseases). EURORDIS has now partnered with NORD in moving forth with this public service of assisting those with rare diseases. This would include promoting Rare Disease Day both in the U.S. and in Europe. This initiative is now slowly being adopted worldwide as related by EURORDIS. Together, both agencies have committed to the following goals:
Implement a comprehensive approach to rare diseases
Develop appropriate public health policies
Increase international cooperation in scientific research
Gain and share scientific knowledge about all rare diseases – not just the most “frequent” ones
Develop new diagnostic and therapeutic procedures
Raise public awareness
Facilitate network of patient groups to share their experience and best practices
Support the most isolated patients and their parents to create new patient communities or patients groups
Provide comprehensive quality information to the rare disease community
And by the way, I know February 28, 2010 has passed, but that doesn’t mean it’s too late to get involved! As stated earlier, the focus in 2010 is to garner strong connections and communication between patients and researchers in lieu of diagnostic and treatment development. Unlike “mainstream” diseases, there are very little (or no) proper diagnostic procedures, information or treatment for these disorders.
Meanwhile, if help is not received, what does this mean for the patients? It means a lack of quality health care. The more time passes, the more progressive, degenerative and even life-threatening the rare disease may become.