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Somewhere between rare disease, chronic conditions, complex medical, disability and invisible illness is the sobering realization that no matter how many people might love and care about you – the journey of living this life can be isolating, uncertain and overwhelming.
As the mother of three kids living with medical complexity, my family spent a ridiculous amount of time in doctors’ appointments and hospitals, in meeting after meeting with teachers and schools. Don’t even get me started on the insane level of emails, phone calls, messages and insurance forms. Far too many people endure this unfortunate reality. But, with only 24 hours in a day, they must also maintain employment and activities of daily living in whatever form that takes. Some days even a simple trip to the grocery store would break me.
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 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 who strive to help heal our healthcare system.
Providing information about issues that impact trust and wellbeing.
Supporting patients, caregivers, physicians and other healthcare providers with information, programs and resources to help navigate “tough touch points” with a goal of improving safety and wellbeing for all.
Beyond supporting patients and caregivers, ElevateRARE recognizes the overwhelming stress and exhaustion experienced by healthcare providers. 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.