Webinar, Blog, and Podcasts
- Education and Support Enhance Care for Rare-Disease Patients. (Clinical Neurology News 2018)
- Rare Connect RareConnect responds to rare disease patients’ need for information and connection by creating international online communities and discussion groups for specific diseases.
External/Other Resources
- Rare Disease eResource Guide: An ASHP eReport. (2015) This eReport will define rare (orphan) diseases and advance pharmacy knowledge about the diseases and related pharmacotherapy (orphan drugs). It will also evaluate rare disease resources such as the National Organization for Rare Disorders (NORD), Genetic and Rare Diseases Information Center (GARD), Canadian Organization for Rare Disorders (CORD), Rare Diseases Europe (EURORDIS), and Orpha.net and provide a portal to the best resources available.
- Rare Diseases and Orphan Drugs: Keys to Understanding and Treating the Common Diseases (2015) This book provides a logical explanation of the relationship between common diseases and rare diseases and how more research into rare diseases can lead to a better understanding of common diseases.
- Orphan Drugs: A Global Crusade (2016) This book of Ms. Meyers memoirs is her effort to document the issues that led to enactment of the "Orphan Drug Act of 1983", and the extraordinary scientific and industrial progress that ensued, including the development of Orphan Drug legislation in other industrialized countries around the world.
- Orphanet Journal of Rare Diseases The official journal of Orphanet, the portal for rare diseases and orphan drugs.
- Abbey Meyers: The "Mother" of Invention. (2011) A brief bio on Abby Meyers.
- ASHP Policy and Positions: Ensuring Effectiveness, Safety, and Access to Orphan Drug Products.
