EDS Guardians, Inc.

EDS Guardians, Inc. is a 501(c)(3) public charity founded in 2023 with the mission of providing support to individuals affected by Ehlers-Danlos Syndromes (EDS), a group of heritable connective tissue disorders. The organization is unique in its structure as a patient-to-patient and caregiver-to-caregiver “pay-it-forward” charity. It is dedicated to helping EDS patients who lack support and require vital medical care.

Founding and Structure

EDS Guardians was founded by Kate Colbert, a patient and healthcare advocate. The organization's Board of Directors includes EDS patients, caregivers, and medical experts, reflecting its commitment to involving those with the condition in its leadership and decision-making processes[1][4].

Programs and Activities

EDS Guardians offers several programs aimed at providing practical support, mentorship, and educational resources to its community. These initiatives include:

• Practical Support and Mentorship: The organization connects patients and caregivers who need support with those who can offer it. This approach helps build a robust community where individuals can learn from each other's experiences.
• Educational Offerings: EDS Guardians is developing educational programs to raise awareness about EDS and improve patient-provider communication. This includes forthcoming webinars and workshops on doctor-patient communication strategies designed to empower patients as experts in their own health[2].
• Travel Grants: A travel grant program is planned for launch in 2025, which aims to assist patients with the financial burdens of traveling for medical treatments and diagnostics[2].
• Community Research and Awareness: The organization is involved in patient-informed community research and awareness efforts to better understand and address the needs of EDS patients.

Mission and Impact

The mission of EDS Guardians is centered around improving the lives of EDS patients by providing them with the support they need to navigate the healthcare system effectively. The organization seeks to create a world where EDS patients feel fully seen, believed, and valued. It aims to make a meaningful difference in the lives of individuals affected by EDS, particularly in areas where access to quality medical care is limited[1][4].

Financial Status

As a 501(c)(3) charitable organization, donations made to EDS Guardians may qualify as charitable deductions for federal income tax purposes[2]. The organization relies on funding from donors and foundations to fulfill its mission and launch new programs[2].