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
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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
Genomenon is an AI-driven genomics company whose mission is to save and improve lives by making genomic information actionable for patients with rare genetic diseases… Continue reading Genomenon
Hope for Hypothalamic Hamartomas (HopeforHH.org) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Our Mission Hope for Hypothalamic Hamartomas… Continue reading Hope for Hypothalamic Hamartomas
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
The Beck-Fahrner Syndrome Foundation is a 501(c)(3) non-profit organization established in Minnesota (United States). We are led by the volunteer efforts of parents with children… Continue reading Beck-Fahrner Syndrome Foundation
Years before, I had always been excited for the final day of February – Rare Disease Day – bur after my grandmother died the year… Continue reading Half The World Goes Dark
My story as a patient in Romania Multiple autoimmune diseases (Dermatopolymyositis, Scleroderma, Sjogren’s Syndrome, Rayanar Syndrome, Mixed Connective Tissue Disease, Overlap Syndrome My name is… Continue reading My story as a patient in Romania