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Pachyonychia Congenita Project: www.pachyonychia.org
PC Project was first recognized as a public charity in the USA in 2004. Their mission is to find a cure for PC by connecting and helping patients and empowering research.
2018 Externally Led Patient-Focused Drug Development Meeting with FDA
PC Project co-organized an Externally Led Patient-Focused Drug Development Meeting (EL-PFDD) for FDA officials on April 6, 2018. Approximately 50-75 Pachyonychia Congenita (PC) patients and caregivers shared their voices through panel presentations, electronic polling and moderated audience discussions.
National Organization for Rare Disorders: www.nord.org
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.