Understadning Rare Disease: the role of novel medications

Usually, I use these papers as a "lunch" topic with medical students.  Now, we do it as a virual lunch over several days in a week (usually, I can do 3 in a week)

Day 1) read Bell Curve https://www.newyorker.com/magazine/2004/12/06/the-bell-curve.

-We discuss their opinions

-We discuss the importance of a family's trust in a provider

-We discuss hard conversations and long term relationships.

Day 2) Read https://www.aacc.org/community/aacc-academy/publications/scientific-shorts/2018/cystic-fibrosis

-We discuss the role of "new diseases" when we learn how to treat the original cause of death

Day 3) We search the NORD website about family groups and their advocacy for new treatments