rare disease | Danny van Leeuwen Health Hats

Advocate ePatient Informaticist Podcasts Researcher

Feb 28th Rare Disease Day: Zebras and Equity #159

Rare diseases as a health equity group. Rare doesn't mean never. Commonalities & differences.Learning from…

Danny van LeeuwenFebruary 27, 2022

Advocate Caregiver ePatient Podcasts Researcher

A Zebra, Not a Horse: Rare Patient Voice

Rare Patient Voice: Gateway to paid Patient Advocacy. Diagnosis-based experience brokers. Interview with Wes Michael.

Danny van LeeuwenFebruary 16, 2020

ePatient Podcasts Researcher

Citizen Participation in Rare Disease Research. It’s Rare.

In the United States, a rare disease is defined as a condition that affects fewer…

Danny van LeeuwenMarch 3, 2019