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The zebra has become a recognized symbol of rare disease, but does not fully capture the reality of what rare disease patients, caregivers and families navigate everyday and endure.
As the mother of three kids living with medical complexity, my family (like many) spent an inordinate amount of time in doctors’ appointments and hospitals, in meeting after meeting with teachers and schools, driving to therapies, and drowning daily in emails, phone calls, messages and insurance issues all while trying to keep my family afloat, emotionally okay and live a life. It’s a reality that many can relate to. Some days even a simple trip to the grocery store would break me.
ElevateRARE is an educational campaign to address the unmet needs of rare and medically complex people. We aim to raise awareness of the gaps in clinical care that cause harm and strive for 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 not only patients and their families but also physicians and other healthcare providers.
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. There is simply not enough awareness of the problem, or resources available to address the physical and emotional burdens that can accompany long diagnostic odysseys and difficult medical journeys.
Amplifying the voices of patients, advocates, physicians, healthcare workers and all stakeholders who strive to improve care, access and outcomes for rare disease, undiagnosed and medically complex patients.
Providing information and educational seminars about care gaps and issues that impact trust and wellbeing.
Supporting patients, caregivers, physicians and healthcare providers with information, programs and resources to help navigate “tough touch points” in medicine.
ElevateRARE recognizes the overwhelming stress and exhaustion experienced by healthcare providers. From a lack of support in the workplace, to being expected to “get it right all the time,” physicians, nurses, psychologists, and social workers are burning out in record numbers. Caring for our nations’ professional carers, helping them enjoy and achieve work-life balance, assuring their continued work without threat of litigation—these goals require significant changes in the system. Our goal is to highlight the complex challenges practitioner’s face to advance this long overdue and much needed dialogue.