Rare Disease Resources
Foundation
Our Mission
Our organization is devoted to promoting the implementation of a comprehensive, multi-disciplinary clinical healthcare system for those with complex rare diseases. We are focused on improving the quality of medical care delivery for patients with chronic rare diseases.
Our efforts include addressing pressing medical issues for those with chronic rare diseases, educating the medical community through clinical immersion opportunities, and making expert medical advice more accessible to patients with complex medical situations.
The Rare Disease Resources Foundation was established to address the current healthcare system's lack of medical awareness of the complexities of care. Although not a direct provider of medical care, the foundation will support and facilitate coordinated care through partnerships and other initiatives.
One of its activities will be to facilitate communication between physicians, the healthcare system, the patient, and their families regarding the course of care.
Our
Focus
Advancement of the quality of medical/healthcare delivery for chronic rare disease patients.
Address unmet and pressing medical issues for those with chronic rare diseases.
Educate the medical community through clinical immersion opportunities to improve the availability of healthcare professionals.
Improve access to expert medical advice for those with complicated situations.
Our Strategy
Rare Disease Resources Foundation is organized and will be operated to address these deficiencies in the current healthcare system by:
Partnering with a 501(c}(3) or governmental healthcare system on the development and implementation of a medical pilot program designed to create a "specialist hub" for the treatment of patients with chronic rare diseases.
Educating the medical community about the benefits of coordinated care and the particular medical pilot program. While facilitating communication between physicians, the healthcare system, the patient, and the patient's family, which is related to the pathway of care.
Additionally, identifying and coordinating care by specialists when more complicated situations demand it. While researching and developing metrics for the measurement of the quality of care to enable the Rare Disease Resources Foundation to study treatment guidelines, pathways, and protocols with an eye toward making constant improvements in the treatment of patients with rare diseases.
Lastly, advancing the value-based care reimbursement model through education and research, as opposed to the fee-for-service payment model.