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. Families stand by helpless and in anguish. An especially sober point is that 75 percent of rare diseases affect children. According to EURORDIS, of this number, 30 percent die before the age of 5. Most of the time, rare diseases are genetic. A smaller category of rare diseases stem from infections, allergies or environmental causes.
So what can be done? In the U.S., contact NORD. If you live in Europe, contact EURORDIS. There may be different ways you can donate to this cause – monetarily, time wise and/or through effort (spread public awareness and even help connect patients with the necessary assistance through hot-lines).
Finally, you never know when you or someone you love may be stricken by a rare disorder. Tolerance and understanding can be the most powerful thing of all. Believe me, I know. I’ve been living with a rare disease for 20 years. At times, it hasn’t been pretty. However, organizations like NORD and EURORDIS give me hope that one day, this will all change. If not in my time, then certainly for the future.
Resources: http://www.rarediseaseday.org/
http://rarediseaseday.us/
NORD - http://www.rarediseases.org/
ERORDIS - http://www.eurordis.org/
Dita Faulkner is a freelance writer. Please preview her poetry at:
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