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NORD Announces RareLaunch Workshops to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs
“NORD’s RareLaunch program aims to empower leaders to start much-needed rare disease nonprofits, and supports existing patient advocacy organizations in developing their capacity to engage in research. These two areas of capacity building represent pivotal stages in a rare disease community’s growth and development and therefore are the focus of December’s workshops. ”
Head of the Herd: Lanie Etkind, Executive Director, Familial Dysautonomia Foundation
“I think some leadership skills are part of one's personality; other skills are learned and acquired, through a combination of training, education, mentorship and on-the-job experience.”
RDCA-DAP First Year Milestones Highlighted at Virtual Workshop
“NORD, C-Path, FDA and more come together to showcase the importance of data sharing in rare disease drug development ”
NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases
“88% of rare patients offered a telehealth appointment during COVID-19 accepted it, 92% of whom said it was a positive experience”
