The Rare Disease Diversity Coalition (RDDC) and the National Organization for Rare Disorders (NORD) have released findings from a comprehensive national survey that sheds light on the barriers faced by underrepresented patients with rare diseases. The survey, which included over 2,800 participants, offers crucial insights into the challenges of accessing healthcare and the disproportionate impact on communities of color.
One of the key findings of the survey is that 50% of respondents reported feeling overwhelmed by the demands of managing their lives, care, or caregiving responsibilities. This highlights the immense emotional and logistical burdens placed on individuals and families affected by rare diseases.
The survey was meticulously designed with input from RDDC’s Patient and Caregiver Working Group, using a mixed-method approach that combined qualitative and quantitative questions to capture a comprehensive view of the participants’ experiences.
“The findings from this survey serve as a wake-up call,” said Jenifer Waldrop, Executive Director of the RDDC. “Over 43 percent of the respondents were from underserved communities, and we found that more than 20% of them delayed or skipped care because they lacked basic needs like food and shelter, a reality that demands immediate attention. We must work together to create a healthcare system that truly accommodates the needs of every rare disease patient and caregiver.”
Pamela Gavin, CEO of NORD, emphasized the importance of these findings in understanding the challenges faced by rare disease patients and caregivers. “This first-of-its-kind survey illuminated many things we know too well about patients with rare diseases and their caregivers—that they are overburdened by their symptoms and the costs of medical care, that they are often excluded from public life, and that in many ways our medical system is leaving them behind. But what it also showed is that these barriers to care are more pronounced for people of color, people in rural areas, non-English speakers, low-income individuals and families, and the many members of our community with disabilities. Any policymaker, healthcare provider, or insurer reading these results should understand that critical action is needed. The good news, which we detail in the report, is that there are solutions—but it will take all of us to make them happen.”
The insights from this survey are expected to guide future policies and interventions aimed at reducing disparities in the diagnosis, care, and treatment of rare diseases. The full report is available here for those interested in further details and the proposed solutions.
