For over a decade, the founders of ElevateRARE 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 can at times, seem insurmountable. These front-line experiences reveal many care gaps in medicine that inadvertently can cause serious emotional harm and negatively impact health outcomes.

Healthcare providers can also be negatively affected by the unsupported challenges of taking care of rare and medically complex patients and other discontinuities in medicine. They too, need support and more resources. 

ElevateRARE is an 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 impact the overall wellbeing of patients, physicians  and healthcare workers.  

We have founded ElevateRARE to have rare conversations about these issues, providing targeted information and education about some of these issues of harm. We want to elevate these rare conversations, bringing 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.