#12DaysofRareChristmas #RoarwithPhoebe
On the 12th day of #RareChristmas Phoebe would like you to know...living rare needs more advocates. Rare patients and families do not tell their stories for sympathy, pity or praise, and they are not seeking attention to make themselves feel better or important. These strong, brave individuals are sharing their stories, their struggles, their life living rare in hopes of bringing change. Change that there will be more treatments and cures. Change that more doctors will know about these diseases and how to treat the patient. Change that insurance will recognize these diseases and pay for testing and medication. Change that those living rare and feel alone know they are not alone, that there are many rare families out there, and we are here to listen and support! Rare Disease Day is the last day of February every year, this year it is February 29. Please consider becoming an advocate, a voice for the rare disease community. VisitGlobalgenes.org, rarediseaseday.org, and/or rarediseases.org to learn more
#12DaysofRareChristmas #RoarwithPhoebe
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AuthorThe 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. Archives
June 2021
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