What's Happening?
The National Organization for Rare Disorders (NORD) has renewed its partnership with Medlive, a company specializing in Continuing Medical Education (CME). This collaboration aims to improve education and outcomes for patients with rare diseases. Over
the past six years, NORD and Medlive have developed more than 140 digital education programs, reaching over 76,000 clinicians, patients, and caregivers. The programs have reportedly led to positive changes in clinical practices and improved communication between patients and healthcare providers. The renewed partnership will focus on using real-world data to generate evidence of care changes and developing innovative educational formats to meet the emerging needs of the rare disease community.
Why It's Important?
This partnership is significant as it addresses the critical need for timely diagnosis and informed care in the rare disease community, which affects over 30 million Americans. By enhancing education for clinicians and empowering patients and caregivers, the collaboration aims to improve health outcomes and quality of life for those affected by rare diseases. The initiative also highlights the importance of collaboration between healthcare providers, patients, and advocacy groups in driving progress in rare disease research and care. The use of real-world data to inform educational content could lead to more effective treatment strategies and better patient outcomes.
What's Next?
Under the renewed partnership, NORD and Medlive plan to introduce new initiatives that include sharing program outcomes at scientific meetings and developing innovative educational formats. These efforts are expected to further connect clinicians, patients, caregivers, and advocates, fostering a more collaborative approach to rare disease care. The partnership will continue to focus on expanding access to education and improving communication within the healthcare community, ultimately aiming to enhance the overall care and treatment of rare diseases.
