Rare Disease Day 2015

Today, February 28th, is Rare Disease Day. According to RareDiseaseDay.Org  A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

• A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

• One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.

Rare Diseases deserve funding and knowledge and research just as much as any other disease that gets mainstream attention. Gastroparesis is one such disease and just happens to be the disease that I live with. I can personally attest to, not only the lack of funding, medication, and research for this disease but also the overall lack of knowledge and understanding--or even WILLINGNESS to understand--Gastroparesis and the inevitable secondary diseases to follow. I can only imagine the horrors that other Rare Disease Fighters must experience.Logically, one can see why I, along with many others, feel it deserves research, funding, and attention as well. Hopefully, a day like today, will cause people to think about the children and men and women who live with Rare Diseases every day and stop and pray for them, put a few dollars of funding toward their disease, look into ways of helping their families (because living with a chronic, incurable disease is hard and expensive), and thank the doctors that care for these rarities.