BOSTON AND WASHINGTON DC, SEPTEMBER 29, 2022 – Ongoing clinician and public education on rare diseases is critical to raising the index of suspicion, decreasing the time to diagnosis, and providing optimal management of patients with these conditions. 

For the past three years, NORD and PlatformQ Health have developed a rich library of rare disease educational resources to improve clinical practice and patient outcomes. On the heels of this initial success, the two organizations have expanded this partnership to increase their impact across the rare disease community, better equip clinicians to recognize and treat rare conditions, and empower individuals and their families to play a greater role in their own health journey.

To date, the partnership has launched nearly 70 outcomes-driven digital education sessions featuring top medical specialists and centers of excellence. This includes the Hot Topic Series, an educational initiative led by rare disease experts covering clinical and practice topics important to NORD and RareDiseaseLive members.

“As the leading nonprofit organization representing the 30 million Americans living with rare diseases, NORD gives voice to families struggling with the unique challenges involved with conditions that are not frequently seen by physicians,” said Robert Rosenbloom, Chief Executive Officer for PlatformQ Health. “Their focus on educational programming that shares patients’ lived experiences has deepened clinicians’ understanding of the rare disease space. We look forward to continuing the partnership to ultimately improve quality of care.”

To date, over 90,000 clinicians. patients, and caregivers have participated in programs, resulting in over 230,000 hours of rare disease education being viewed by learners. 93% of participating clinicians reported that the programs had a positive impact on their clinical practice, while 66% of participating patients and caregivers reported a positive impact on communication with their clinician.

Through this initiative, NORD’s disease-specific partners gained opportunities to educate clinicians and patients in their respective disease areas. “Clinicians and patients alike are inundated with online programming offers, so capturing attention and awareness isn’t an easy task,” said Ed Neilan, MD, PhD, Chief Medical and Science Officer for NORD. “We appreciate PlatformQ Health’s deep understanding of how to engage learners and offer programming that has a lasting impact. Their reach enables our member organizations to extend education beyond their respective communities. We’re thrilled to continue the partnership.”

Learn more about rare disease educational programming.

About the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.

About PlatformQ Health

PlatformQ Health is the leading provider of interactive digital medical education for clinicians, patients, and caregivers. To improve patient care, PlatformQ Health creates video-first educational modules with premier partners, so learners can better understand conditions, available treatment options, and the latest research. The company’s proprietary platform allows participants to engage in real-time discussion with scientific, research, and patient care experts – and the integrated learning solution enables advocates, administrators, health systems and plans, foundations, societies, member organizations, and associations to measure the impact of their education.