Do No Harm


We have created this space to

It's Time To Talk About What Hurts

The Do No Harm Project is a campaign to call for reform and better protection for rare disease families. 

We are a grassroots effort of concerned rare disease parents, non-profit organizations, advocates, physicians, mental health professionals, legal professionals and child welfare workers who recognize that long diagnostic journeys, gaps in rare disease awareness, access to care challenges, misdiagnosis, and at times, gaslighting, negatively impacts the overall wellbeing of patients, physicians  and healthcare workers alike.  

Rare disease, chronically ill, and medically-complex patients continue to face surprising obstacles as they navigate to find care in a broken healthcare system. This broken system is not meeting their needs. Misdiagnosis and PTSD in medical settings is a rising and unfortunate outcome that many patients experience. There is simply not enough awareness of or resources to address the physical and emotional burdens that can accompany difficult medical care journeys.