AdvocacyLeading advocates and experts share their experiences
Lynn O’Connor Vos, President and Chief Executive Officer at the Muscular Dystrophy Association, discusses her organization and it’s approach to funding research to accelerate treatments and cures across the full spectrum of neuromuscular diseases.
Lynn O’Connor Vos, President and Chief Executive Officer of the Muscular Dystrophy Association (MDA) provides an overview of her association.
That ease of letting the U.S. take care of the work means that Canada is missing out on early patient access, research funding, and biotech investments.
At the BIO International Convention recently held in Philadelphia, PA, we talked with Christina Hartman, Senior Director of Advocacy & Policy for the EveryLife Foundation for Rare Diseases about the origins of this amazing organization.
At the BIO International Convention recently held in Philadelphia, PA, we talked with Christina Hartman, Senior Director of Advocacy & Policy for the EveryLife Foundation for Rare Diseases about some of the efforts the non-profit organization is doing to reduce the time to diagnosis, including their advocacy work focused on newborn screening.
Sickle Cell 101 conducts patient engagement interactions to better understand patient experiences in the sickle cell community.
Rare Disease International (RDI) is a global alliance of rare disease patient organizations designed to be an international voice for the rare disease community. One of its key initiatives is to include rare diseases in the Universal Health Coverage being developed by the United Nations (UN) for the year 2030.
Karolyn Lewandowski is the Chief Operating Officer & General Counsel of the Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation, a non-profit organization focused on sponsoring research towards pseudomyxoma peritonei, appendix cancer, and related peritoneal surface malignancies.
Jeffrey W Olin, DO, Professor of Medicine at the Icahn School of Medicine at Mount Sinai, discusses the Fibromuscular Dysplasia Society of America (FMDSA) and it’s FMD Registry.
Ilan Ganot, Co-Founder, President and CEO of Solid Biosciences discusses how his company views advocates and patients who have Duchenne muscular dystrophy (DMD). Mr. Ganot started Solid in 2013 to find treatments, and potentially a cure, for DMD, a disease that afflicts his son Eytani.