Today is a special day that unites more than 60 countries worldwide. Rare Disease Day was established as a day to bring awareness to rare diseases, which in the United States are defined as conditions that affect fewer than 200,000 people. Currently, a total of about 30 million Americans are affected by almost 7,000 rare diseases. The Rare Disease Day 2013 slogan is "Rare Disorders Without Borders" to convey the global solidarity of the rare disease community worldwide and the need for collaboration and mutual support in the field of rare diseases (www.rarediseaseday.org). This is very important to me because with Cole having PBD (Peroxisomal Biogenesis Disorder) we are apart of this community. This is joining patients, families, healthcare providers, and patient organizations around the world to support a day that focuses attention on rare diseases. It’s very encouraging to see the great strides that have been made to bring awareness and recognition to the rare diseases out there. And with the continued research they are doing I am very hopeful there will be more treatment options available and hopefully one day a cure for this disease and many others. I have been very lucky and have connected with some amazing families through various support systems. It’s nice to know you aren’t alone in this journey, we’re all faced with different obstacles but have a common bond. Please take a moment to think about and pray for those that are affected by some type of disease. Take time to celebrate life and all the precious things around you. :) And here are few pictures of the main reason I wake up every morning with a big ole' smile on my face!!!
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