Category: Patient Advocacy Organization – Spotlight Series

Spotlight Series – Data Ethics and Patient Advocacy Organizations: Q&A with Christopher Scalchunes of the Immune Deficiency Foundation

The conversation around patient data ethics is changing every single day. As the stewards of the patient data ecosystem, patient advocacy organizations are coordinating disparate researcher needs to prioritize the data that supports mission-based research. Because of this important role, it’s essential for these organizations to stay on the cutting edge of the patient data, ethics and privacy landscape The Immune Deficiency Foundation (IDF) is a nonprofit health organization that’s…