World Rare Disease Day is not just about awareness, but also advocacy. The theme of Rare Disease Day this year is “Reframing Rare: Rare is Many, Rare is Strong, Rare is Proud.” Rare Disease is actually not all that rare. Over 300 million individuals live with a rare disease and 1 in 10 individuals will be diagnosed with a rare disease in their lifetime. Yet, patients with rare disease are not always treated equitably and systemic barriers exist making it difficult to obtain necessary care, treatment and resources. All month, we have been sharing about #PURAPerfect Ryker and his family. Today, we wanted to share how everyday people are making a big difference in the fight for equitable care. Above is a photo of Ryker’s dad, Brett, Testifying before the State of Delaware Finance Committee in March of 2019, advocating for funding and increased wages for home health skilled nursing in the State. #ShowYourStripes #AloneWeAreRare #TogetherWeAreStrong

See more about Ryker’s story under the “Ryker’s Story” tab on the homepage!

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