For Rare Disease Day 2018, Cristina Might, president of NGLY1.org, presented at the University of Alabama Birmingham about how the challenges with coordinated care are particularly magnified in cases of rare disease management.  She also discussed how rare disease patients and/or their caregivers can facilitate and even improve coordination of medical care by:

  1. Having a high level understanding of the healthcare system and those involved
  2. Fostering communication
  3. Utilizing technologies old and new