The Do No Harm Project 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 a they navigate to find care in a broken health system. This broken system is not meeting their needs. Misdiagnosis and PTSD in medical settings is a rising and unfortunate outcome that many patients experience. There is simply not enough awareness of or resources available to address the physical and emotional burdens that can accompany difficult medical journeys.
Providing information about “harm 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 and identified resources to help navigate “tough touch points” with a goal of improving safety and wellbeing.
It can take many years to obtain a diagnosis of a rare disease (5 years is the most recent estimate.) During that time, the stress and psychological toll on the patient and their family is enormous. Even after diagnosis, treatments may not be available.
In the US, a rare disorder is defined as a disease or condition affecting less than 200,000 Americans. With more than 7,000 rare diseases identified, around 30 million Americans have a rare disease.*
Patients with rare diseases often have multiple issues negatively impacting their lives. One study found that among outpatient visits to primary care physicians, rare diseases accounted for 1.6% of the visits between 2012 and 2014. Patients with rare diseases were 52% more likely to be referred to another provider.
There was no significant difference in the amount of time spent with patients with rare disease versus common disease. However, those with rare disease had a significantly higher total number of chronic diseases compared with patients without rare disease.**
Beyond supporting patients and caregivers, The Do No Harm Project 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.
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
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Notifications