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Understand Drug Development for Rare Diseases: Free Online Series

Explore the drug development process for rare diseases with a free online course by NORD. Empower yourself with knowledge and make a difference.

Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational series to help teach patients and families about the steps involved in developing a new drug treatment, particularly for rare diseases.

Understand Drug Development for Rare Diseases Free Online Series blogThe course is completely free and available online in both English and Spanish. “Rare Disease Drug Development Series: What Patients and Advocates Need to Know” is made up of bite-sized modules that can be taken at your convenience. Enroll in the free course here.

The goal of this educational series is to provide families with the knowledge to empower them to effectively engage with and contribute to the drug development process. Modules will continue to be released throughout the year. The current modules provide an overview of the drug development process, including: discovery and development; preclinical research in cells and animal models; clinical research in humans; FDA review; and then post-market safety monitoring for drugs that are approved. 

The course presents ways that patients and patient organizations can engage with each step of the process and make important contributions. The course also discusses some of the unique challenges specific to rare diseases along the way.

FPWR funds research, resources, and programs all along the drug development pathway, and these are highlighted in the graphic below. This excellent course from NORD, specifically designed for patients, is a great resource for families with rare diseases like PWS to learn more about each stage of the drug development process in more detail. If you are interested in taking the course, please click here.

Understand Drug Development for Rare Diseases Free Online Series

If you are interested in taking the course, please click here.

Topics: Parents, Learning

Jessica Bohonowych


Jessica Bohonowych is a graduate of Duke University, and holds a PhD in Pharmacology and Toxicology at the University of California, Davis. Incorporating her research background, knowledge of pharmacology and drug development, and teaching experience, Jessica works with Theresa Strong in managing FPWR’s grant portfolio, communicating research results and breakthroughs to our community, aiding in special projects such as the Clinical Trials Initiative and Molecular Resource Center, and is heading the development of the Global PWS Registry.