On the 12th day of #RareChristmas Phoebe wants you to know....Rare Disease Day is February 28, 2017. "The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign...seeks to raise awareness amongst policy makers, public authorities, industry representitives, researchers, health professionals..." The impact of raising awareness for these diseases was particularly felt on December 23, 2016. On that day the FDA approved the FIRST treatment for SMA (Spinal Muscular Atrophy). This milestone is why we fight. Many children were no longer with us when this drug was approved. Hopefully those who are still suffering and those who will be diagnosed with this devastating disease can benefit from this now approved drug. This is only the beginning. Over 95% of rare diseases have no treatment. By raising awareness, the hope is to reduce that percentage, giving more children a better quality of life. Please consider becoming an advocate, a voice for the rare disease commnunity. Visit globalgenes.org, rarediseaseday.org and/or rarediseases.org to learn more #12DaysofRareChristmas #RoarWithPhoebe
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.