Partnership in Rare Disease - PlatformQ Health

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

30
Million people have a rare disease
5-7 yrs
Average time to diagnosis
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

September 24, 2024 / Blog, Outcomes, Poster, Rare Disease

Evolving Standards of Care in Rett Syndrome Highlight The Need For Continuous Education

The treatment of Rett Syndrome (RTT), a rare, genetic neurological disorder affecting young children that leads to severe impairments, is continuing to evolve. The first therapy was approved in March 2023, and with several investigational assets on the horizon, there is a critical need to educate both community-based clinicians and Centers of Excellence on this change to the standard of care. Read More

April 16, 2024 / Blog, Outcomes, Poster, Rare Disease

Lessons Learned by Tracking Educational Program Outcomes

PlatformQ Health is known for its outcomes-driven education. At this year’s European Conference on Rare Diseases, we co-presented two posters highlighting outcomes and lessons learned from recent programming. Read More

September 26, 2023 / Blog, Outcomes, Poster, Rare Disease

Multi Stakeholder Collaborations Poster Selected for NORD’s Lightning Round Poster Presentation

PlatformQ Health is excited to share that our poster session “Incorporating the Patient Voice in Rare Disease Education: Multi Stakeholder Collaborations to Improve Diagnosis, Quality of Care, and Outcomes” was selected to be presented both at the 2023 NORD Breakthrough Summit and at the Lighting Round Poster Presentations taking place from 4:30-5:00 PM on Monday, October 16. 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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