This year we will be dressing in rainbow stripes for #RDD2022. Would you like to know why? In 2020 our family was growing just as… Continue reading Finding Our Moon’s Mission: to cure SPG56
Results for "light up for rare"
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Born in 2009, Jackson had lots of minor health issues throughout childhood that always seemed random and unlucky but not part of a bigger picture.… Continue reading Mystery Solved
From INVISIBLE to VISIBLE. My name is Nicole, I’m 24 and I have a rare disease called systemic mastocytosis. Since I was a child I… Continue reading From invisible to visible
My entire life I was misdiagnosed with a blood disorder, originally doctors said I had factor XI, others referred to my diagnosis as pseudo hemophilia.… Continue reading Courage of four
Birdshot Uveitis Society of North America is a not for profit organization with a vision to support birdshot uveitis patients, to increase awareness of this… Continue reading Birdshot Uveitis Society of North America
Social media campaigns highlighting specific rare diseases throughout the month leading up to rare disease and an internal rare disease awareness campaign for rare disease… Continue reading Masters Speciality Pharma
Today is the launch of the official Rare Disease Day 2022 video in over 40 languages! This video kicks off the international patient-led campaign and… Continue reading Official 2022 Global Video Launch
Avery’s Hope raises money and awareness for rare, ultra rare and undiagnosed pediatric GI patient families assisting with out-of-pocket and insurance denied expenses. We will… Continue reading Avery’s Hope
Raiden Kai Pham was born February 26th, 2020, right before the start of the pandemic in Portland, Oregon. With arms flexing, he was ready to… Continue reading Raiden’s Journey