A Collaboration in Online Rare Disease Education

Nearly one in ten Americans are living with a rare disease. Obtaining a proper diagnosis can be a long journey for many patients. We’re proud to partner with the National Organization of Rare Disorders to produce meaningful online education for providers, patients, and their families. These programs support timely diagnosis and treatment, and empower patients and their families. Knowledge is power when it comes to healthcare — leading to better outcomes for all.

Patients cannot wait for clinicians to learn about their conditions.

  • Clinicians need education about rare diseases to help them identify, diagnose, treat & prescribe for these conditions
  • All HCPs need education – not just doctors
  • HCPs need to hear from patients and their families first-hand about their challenges and experiences
  • Woman Icon

    30

    Million people have a rare disease

  • Calendar Icon

    5-7 yrs

    Average time to diagnosis

  • Rare Disease Icon - Zebra

    7,000

    Rare diseases

The Next Frontier of Rare Disease Education

By partnering with NORD, the leading rare disease advocacy organization, we provide healthcare teams meaningful rare disease education to improve patient care. Together, we’re:

  • Designing and distributing disease-specific & general rare disease education
  • Leveraging top medical specialists, NORD’s foundation & patient organization members, and centers of excellence
  • Including the patient voice in HCP education

Check out some of our latest Rare Disease Resources

Addressing the gulf between patient and provider perspectives
/ Blog, Insights

Addressing the gulf between patient and provider perspectives

Tethered education: Aligning patients and providers  What spurs patients to choose one treatment option over another? What are the hurdles Read More
Rare Disease Digital Education Infographic
/ Blog, home-feed, Insights, pinned, Resources

Rare Disease Digital Education Infographic

A year-long initiative to produce rare disease digital education made a positive change on clinical practice and patient outcomes. Read More
A Spotlight on Rare Disease Products: From Launch & Beyond
/ Blog, home-feed, Insights, pinned

A Spotlight on Rare Disease Products: From Launch & Beyond

Promoting new therapies in the rare disease space comes with unique challenges. There are many hurdles to gaining market adoption, particularly for those among the first to market in a disease state. Read More

Katie Kowalski

Associate Director, Education Programs
NORD

“Accessible, online rare disease education aims to shorten the time to diagnosis and improve quality of care. Alongside NORD’s network of 330 disease-specific member organizations we will continue to deliver actionable rare disease education to HCP’s and patients to improve patient outcomes and the lives of rare families. ”

“No doctor wants to feel unprepared, and for the families who are facing a rare disease, the status quo isn’t enough. With NORD’s understanding of and connections to the rare disease world, and our technology and experience in continuing medical education, we hope to empower clinicians so they can guide patients to the best possible results.”

Robert Rosenbloom

CEO & President
PlatformQ Health

Support Rare Disease CME

Get more information about how to educate clinicians about rare diseases, by:

  • Partnering to provide resources for clinicians
  • Providing financial support to make programs possible
  • Participating in a program panel

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