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Objective: To determine the financial impact of Ehlers-Danlos syndromes (EDS) on patients in the United States by examining the medical expenses incurred by patients. Patients and Methods: We used a convenience sample approach and disseminated a self-reported survey questionnaire to individuals with EDS via patient advocacy organizations and support groups across the country, social media, and health professionals from April 1, 2023, to December 31, 2023. The survey focused on the out-of-pocket medical expenses incurred by patients. Results: The final analytic data set included 884 responses. Responses were received from individuals in all 50 states and the District of Columbia. More than 50% reported individual income less than $25,000, and more than 30% reported household income less than $50,000. More than 80% of respondents had some type of commercial insurance and 29% reported receiving Medicaid. Respondents received more financial assistance from their family and friends than from government sources. The total median out-of-pocket financial cost by our analysis was $13,450 (IQR: $6500-$25,800). Of the 838 who responded to the question, “Did the affected person receive the health care they needed?”, 19% answered “no”, 51% answered “yes, sometimes”, and 30% answered “yes, most of the time”. Conclusion: The factors contributing to financial impact include both direct and indirect costs of accessing and receiving medical care. Our study findings highlight the magnitude of the burden of health care spending on patients with EDS.

Introduction: Food insecurity is a common problem with many associated negative downstream health impacts. Despite government sponsored and private supports, many individuals struggle with making healthy, nutritious meals. Penn State's Cooking with the Community program was constructed with the objective of providing cooking equipment and instructions to increase knowledge of healthy cooking techniques and consumption of under-utilized food pantry ingredients. Methods: Four cooking demonstrations were held over an 8-month study period in 2021 designed to educate participants on under-utilized and seasonally available ingredients. Each demonstration was professionally led by a chef who taught cooking skills and the use of different equipment, which were subsequently gifted to the participants. Participants were surveyed before and after each demonstration to assess cooking perceptions and comfort using Likert scales. Final analysis was completed in 2022 using mixed effects models to analyze changes between pre- and post-demonstration. Results: There were 34 total participants. Statistically significant improvements were seen in confidence in cooking (mean increase=0.5; SD=0.2; p=0.031; 95% CI=0.1, 1.0), preparation of a simple recipe (mean increase=0.6; SD=0.2; p=0.013; 95% CI=0.1, 1.0), and cooking new foods (mean increase=0.6; SD=0.3; p=0.026; 95% CI=0.1, 1.1). Conclusions: Cooking with the Community provides valuable information on how cooking confidence may be boosted within vulnerable populations by providing cooking equipment and professional instructions on its use.