#USA #NORD #Rare Disease #Medlive #Boston and Washington

Strengthening Education for Rare Disease Management

The partnership between the National Organization for Rare Disorders (NORD) and Medlive continues to evolve, focusing on enhancing medical education and resources for rare disease management. Recently renewed, this collaboration aims to empower healthcare providers, patients, and caregivers through essential knowledge and tools designed to improve the diagnosis and treatment of rare diseases.

Founded in 1983, NORD has established itself as a leading nonprofit organization dedicated to improving the lives of over 30 million Americans living with rare diseases. The organization collaborates with more than 350 disease-specific member groups, driving progress through education, advocacy, and research. Medlive, formerly known as PlatformQ Health, has been a key ally in this mission, delivering innovative digital educational content that is both impactful and actionable for healthcare professionals.

A Shared Mission

The renewed partnership reflects both organizations' commitment to expanding access to crucial education about rare diseases, allowing clinicians to make informed decisions that lead to timely diagnoses and effective treatments. The collaboration has produced an impressive array of over 140 digital programs, featuring insights from experts in the field of rare diseases. These programs have engaged more than 76,000 participants, including clinicians, patients, and caregivers. According to the feedback, 93% of clinicians reported observable improvements in their clinical practice post-participation, while two-thirds of patients noted enhanced communication with their healthcare teams.

Pam Gavin, the CEO of NORD, emphasized the importance of this partnership, stating, "Medlive not only shows a commitment to educational innovation, but they also understand the pressing needs of the rare disease community. Their focus on timely diagnoses and informed care is crucial for improving patient outcomes."

Future Initiatives

The next phase of this collaboration includes several initiatives aimed at enhancing the quality of care for rare disease patients:
1. Real-World Data Utilization: Both organizations aim to leverage real-world data to substantiate claims made in medical education, thereby enhancing the overall quality of evidence-based care.
2. Scientific Sharing: The outcomes of the programs will be shared in various formats, including abstracts and presentations at leading medical conferences, thereby disseminating learned lessons and fostering collaboration within the medical community.
3. Innovative Educational Formats: The collaboration will also explore new educational models that address the dynamic needs of the rare disease community. This will ensure that patients and care providers have access to the latest information.

Robert Rosenbloom, CEO of Medlive, echoed the sentiments of partnership, highlighting their role in bridging clinical expertise with the real-life experiences of patients. “We are deeply honored to extend our partnership with NORD. By introducing new models that promote interactions among clinicians, patients, caregivers, and advocates, we strive to improve outcomes for those affected by rare diseases,” he said.

Conclusion

NORD's collaboration with Medlive exemplifies the power of partnership in the healthcare ecosystem, particularly in dealing with rare diseases. The emphasis on education not only aids healthcare providers but also enriches the experience of patients navigating these challenging conditions. As the organizations continue to work together, they not only raise awareness but also foster an informed community dedicated to making tangible advances in rare disease care. Together, they are paving the way for meaningful improvements in clinical practice and patient engagement, signaling a brighter future for individuals affected by rare conditions.

For more information on their educational resources, visit Medlive's educational platform.