Patient Engagement
Patient Resources
Research Information for Families
This page offers appealing multimedia material designed for non-scientists and even young children. It includes animated videos, comic books, and more links to engage the general public in the process of medical research.
Guide to Patient Involvement
The Everylife Foundation empowers the rare-disease community by advocating for effective, science-driven legislation toward equitable development of and access to lifesaving diagnoses, treatments, and cures.
Patient Engagement Opportunities
The US Food & Drug Administration leads an initiative for patient engagement to incorporate patient concerns within the nation’s strategy for drug development. They convene patient engagement events, public discussions, listening sessions, forums, and public advisory meetings.
Clinical Research and You
Do you wonder, “Why should I participate in clinical trials?” This page clearly makes the case for what’s in it for you and society at large.
What is “Informed Consent”?
The Office for Human Research Protections at the US Department of Health and Human Services educates patients about participation in medical research, with particular emphasis on the informed consent process. Their webpage includes informational videos and other forms of guidance helpful for potential trial participants.
Empowering the Rare Disease Community
The National Organization for Rare Disorders (NORD) website offers many tools for patients and families affected by rare diseases, including: webinars, databases, factsheets, fundraising resources and conferences.
Patient Guide to Stem Cell Treatments
The International Society for Stem Cell Research provides an educational resource empowering patients and the public with trusted, essential stem cell knowledge to make informed health decisions. An accessible overview and downloadable Patient Guide to Stem Cell Treatments, developed by leading stem cell scientists worldwide, can be found at their patient resource site using the link below.