Patient Advocacy Organizations and Corporate Relationships

Bridging dermatologists with patient advocacy organizations through smartphones.

IMPORTANCE Patient advocacy organizations seek to increase their benefits for patients with skin disease; low awareness and patient referrals among dermatologists have presented an obstacle to this. OBJECTIVE To determine whether the Skin Advocate iPhone App would increase awareness and referrals to patient advocacy organizations in the Coalition of Skin Diseases (CSD) among Texas dermatologi...

Patient advocacy and termination from managed care organizations. Do state laws protecting health care professional advocacy make any difference?

Iranian nurses’ perceptions of patient advocacy

Background and Purpose: One of the most important elements of nursing ethics is patient advocacy, which instills patients’ sense of independence and autonomy. Nurses’ perceptions of this concept can significantly influence their advocacy role. Therefore, in this study, we aimed to assess nurses’ perceptions about this phenomenon. Methods: In this cross-sectional study, 385 nur...

Generating sociability to drive science: patient advocacy organizations and genetics research.

This paper examines how patient advocacy organizations (PAOs) representing those with rare genetic disorders drive research to their concerns. The rarity of the diseases produces a basic condition of marginalization: small numbers of widely distributed disease sufferers. The lack of promise of an eventual market makes it difficult to attract the economic and biological resources necessary for s...

Disease advocacy organizations catalyze translational research

Disease advocacy organizations have long played an important role in the continuum from basic science to therapy development in rare disease research. PXE International has led the field in innovative ways, venturing into specific activities that have traditionally been conducted by scientists. As lay founders, we have engaged in gene discovery, gene patenting, diagnostic test development, epid...