ElevateRARE is a campaign to call for reform and better protection of rare disease families.
We are a grassroots effort of concerned rare disease parents, patients, advocates, physicians, mental health professional, 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 health care workers alike.
Rare disease, chronically ill, and medically-complex patients continue to face surprising obstacles as they navigate to find care in our highly specialized and broken health system that is not meeting their needs. Medical misdiagnosis and PTSD in medical settings is a rising and unfortunate outcome that can cause harm for patients and healthcare providers alike. There is simply not enough awareness of the problem, or resources available to address the physical and emotional burdens that can accompany long diagnostic oddysseys and difficult medical journeys.
Providing information about issues that impact trust and wellbeing.
Amplifying the voices of patients, advocates, physicians, healthcare workers and all who strive to help heal our healthcare system.
Patients, caregivers, physicians and healthcare providers with supporting information, programs and identified resources to help navigate “tough touch points” with a goal of improving safety and wellbeing for all.
Legislative efforts to protect children with rare disease and/or complicated medical conditions and their families are in the works throughout the US.
Links to press on rare disease, complicated medical conditions, safety, PTSD, misdiagnosis and more
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