For over a decade, our founders have volunteered time to support patients and families living with rare and medically complex conditions through various nonprofits and patient support communities.

The challenges of finding a doctor, trying to get a diagnosis, dealing with insurance issues and trying to live life with a chronic condition seem insurmountable. These families’ front-line experiences reveal many care gaps in medicine that cause emotional harm and negatively impact health outcomes.

Yet, we have found that patients and healthcare providers alike are negatively affected by discontinuities in medicine.

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. 

We have founded ElevateRARE to provide targeted information and education about some of these issues of harm. We want to bring all parties to the table to talk about real-world care challenges that are difficult to acknowledge, but are not unfixable.

Our ultimate goal is to be a vehicle for change and a platform for healing.