Insights

Dr. Jeffrey Cooper, MD, Living with Parkinsons, and Expert in Clinical Trials, on how hard it can be for Patients to find Clinical Trials

Julia Jenkins, EveryLife Foundation for Rare Diseases: Patient’s Shape Science-Driven Public Policy

How do I handle a deviation in the use of blood specimens collected outside the timeframe?

Is it possible to make a PI’s name or institution confidential on a consent form?

Mark Dant, Pushing for Research that Saved his Son’s Life in the Fight Against MPS I and Advocating for Change

Dr. Emil Kakkis: Developing Novel Treatments for Rare Disorders and Connecting With Patients as Critical Partners in Research

Sarah Tompkins, on having Ehlers-Danlos Syndrome, having a mis-understood disease, taking a lead in advocacy

Sarah Zentack, Leslie Urdaneta: Ensuring Genetic Counseling is Incorporated Into the Patient Experience

Amanda Moore: An Inside look at Angelman Syndrome

Karmen Trzupek, MS, CGC, Director of Ocular & Rare Disease Genetic Services: The Role & Importance of Genetic Counselors to Patients