Francesca Carubbi, MD, PhD, of the University of Modena and Reggio Emilia, Italy discusses the impact the COVID-19 pandemic has had on lysosomal storage and rare disorders in Italy.
This presentation was part the live GRIDS 2020-Virtual Summit held July 1, 2020 and is now available exclusively on CheckRare.
To view the entire session and receive CME credit, go to https://checkrare.com/learning/p-grids2020-module1-natural-history-of-lysosomal-disease-patients-during-covid-19/
Scott Harwood has had a career of 20+ years in or related to the pharma/biotech industry. Since leaving pharma sales, he has worked mostly in medical media with a focus in Oncology and Rare Diseases. As one of the founding members of CheckRare, he is responsible for content strategic alliances with advocacy groups, centers of excellence, and covering conferences. As a former caregiver, Scott continues to be an advocate and fundraiser for rare disease causes.
Peter Ciszewski has worked in health care publishing and media for most of his career, from overseeing editorial and production departments to running companies. He has founded publications, web platforms, and companies focused on clinical and health care issues.
For most of his career, Peter has been focused on rare diseases and oncology. He started working with Genzyme on programs focused on lysosomal storage diseases soon after the company received approval for Cerezyme, one of the first life-saving and blockbuster medications for rare disease patients. He has since worked across hundreds of rare diseases, creating content and promotional and educational programs.
Most recently, Peter founded and manages CheckRare, providing news, insight, and clinical perspective to physicians, patients, and the rare disease community.
Simon Evans is a dynamic leader with over thirty years of designing and implementing simple processes to make best use of data. That translates into a passion for that data – collecting, maintaining, selecting, analyzing, and reporting.
Simon thrives in a fast-paced, ever-changing environment, delivering results using a unique blend of technical expertise, operational process knowledge and disciplined project management. A hands-on professional with a proven record of delivering high-value, strategic solutions. Possessing strong relationship building and communication skills, equally comfortable working with tactical details and strategic, long-term planning.
James Radke (PhD, Pharmacology) transitioned from a world-renowned scientific researcher to a medical writer and rare disease expert over 20 years ago when his daughter was born with craniosynostosis. Jim’s curious nature and motivation to educate has helped him create numerous learning programs– from CME programs and white papers for health care professionals to brochures and comic books for parents and children. Jim’s current role as Director of CheckRare CE is a perfect fit for his skills, interests, and passions. He regularly interviews KOLs and advocates and those conversations, along with his keen insights into the rare disease community and interest in the latest medical innovations, often guide his CME ideas.
In addition to educating health care professionals about rare conditions, Jim continues to work with a variety of patient advocacy groups and is always willing to put on his zebra costume for a good cause.
Brad studied mechanical engineering and CAD/CAM, where he also worked as a teaching assistant in the continuing education program. He worked for 15 years as a research engineer, managing programs and teams that developed hi-tech engineered wood products.
While operating a website design business, Brad was diagnosed with Pompe disease in 2006. Since then he has led the Canadian Association of Pompe (CAP), a patient group for families affected by Pompe. Brad is CAP’s executive director, planning and managing many live and virtual patient educational events. He represents the organization in communications with patients, other patient advocacy groups and industry.
Brad sits on boards and advisory boards for a number of nonprofits and patient organisations. His experience and technical background meshes well with CheckRare’s educational and awareness goals.