uniting voices & healing healthcare

Founder, Donna Sullivan explains:

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.  

Healthcare is Broken

ElevateRARE is a campaign to call for reform and better protection of rare disease families.

It's Time To Talk About Rare and Complex Conditions

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.

Together We Can Do More

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. 

How We Help

Educate

Providing information about issues that impact trust and wellbeing.

Elevate

Amplifying the voices of patients, advocates, physicians, healthcare workers and all who strive to help heal our healthcare system.

Empower

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. 

 

Do No Harm Project

Healthcare Providers

Beyond supporting patients and caregivers, ElevateRARE recognizes the often 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.  Highlighting the complex challenges practitioner’s face is another important way to advance a long overdue and much needed dialogue.

Information & Resources

  • Parental rights
  • PTSD in the medical setting
  • Misdiagnosis
  • Psychological safety
  • Communication strategies
  • Preventing burnout
  • Medical child abuse

Take Action

Legislative efforts to protect children with rare disease and/or complicated medical conditions and their families are in the works throughout the US.

News

Links to press on rare disease, complicated medical conditions, safety, PTSD, misdiagnosis and more 

Join the Conversation

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