Rare disease conference to be held online, featuring dedicated tracks patients and families and medical professionals and students.
PlatformQ Health is proud to be supporting the National Organization for Rare Disorder’s (NORD) annual Living Rare, Living Stronger Patient and Family Forum. During this challenging time, when communities are coping with the repercussions of the COVID-19 crisis, including the impact on live, in-person conferences, PlatformQ Health is uniquely positioned to help NORD pivot to a live, virtual conference through use of their Conduit platform.
PlatformQ has been a pioneer in the field of live, video-based education for more than 10 years. Robert Rosenbloom, CEO of PlatformQ Health shares, “During this time, we have learned that the success of virtual education events requires both the underlying technology that provides an engaging, interactive experience for attendees, as well as a team of seasoned program and production experts to support online event execution.”
In 2019 PlatformQ Health and NORD established a partnership to provide online Continuing Medical Education for clinicians as well as tailored education for patients and caregivers. Together, NORD and PlatformQ Health target resources to health care professionals, patients, and families to facilitate timely diagnosis and improved care for people with rare disorders. The virtual Living Rare, Living Stronger event provides an opportunity to expand the pair’s collaboration to support the rare community.
In addition to tracks for newly diagnosed patients, advanced patients, and caregivers, this year’s event includes engaging workshops for medical professionals and students. Topics include Gene Therapy for Rare Diseases, Caring for Rare Disease Patients in Your Practice, and Current Trends and Opportunities in Rare Disease Research: What Every Physician Should Know about Research. Speakers include medical and research professionals from The National Institutes of Health, PCORI and leading medical institutions from around the country.
This year’s Living Rare Forum will include engaging digital sessions along with interactive Q&As and inspiring online panels presented by patients, caregivers, and top rare disease medical experts. Katie Kowalski, NORD’s Associate Director for Education, shared “We are thrilled to have a partner that is just as excited as we are to provide the rare disease community with meaningful education, networking opportunities, inspiration, hope and fun!”
Together, PlatformQ Health and NORD will provide patients and families with up-to-date and meaningful education about living their best lives with rare diseases while simultaneously preparing physicians and medical students about how to treat and care for their patients.
Recent PQH and NORD Digital Education Collaborations for Patients and HCPS
PlatformQ Health and NORD have partnered to design and distribute disease-specific and general rare disease education, leverage top medical specialists from NORD’s foundation and patient organization members, and incorporate the patient voice in HCP education. Educational activities launched over the last year that are currently available to watch on-demand include:
- Tenosynovial Giant Cell Tumor: New Systemic Treatment Options to Address Unmet Needs
- Humanistic and Economic Burden of Dravet Syndrome: Multidisciplinary Approach to Recognize and Address
- Improving Outcomes in Spinal Muscular Atrophy: Best Practices for Clinicians and Caregivers
- Dravet Syndrome and Your Family: Diagnosis, Treatment, Family Needs, and Support
- Hairy Cell Leukemia: Addressing Unmet Clinical Needs
- Optimizing Prophylaxis Strategies of Hemophilia A with or without Inhibitors: For Whom, When, and How Long?
- Spinal Muscular Atrophy: Best Practices in Diagnosis and Management
Most recently, PlatformQ Health and NORD launched the aligned educational program, Overview on Hemophilia A Management for Clinicians and Patients: A Joint CME & Patient Educational Initiative, which includes a dedicated patient education session and a CME activity for health care professionals. These two sessions share similar learning objectives related to treatment and overall care to help break down communication barriers between patient and clinicians, facilitating shared decision making.
The patient education portion of this initiative, A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care, aired on RareDiseaseLive and OMedLive in early June and is now available to watch on-demand. This is an interactive, expert-led HCP-patient-family educational activity that was developed to offer clarity and guidance, as top experts answered questions that patients and families had regarding their treatment and overall care.
The CME portion of this program titled, Optimizing Prophylaxis Strategies of Hemophilia, A with or without Inhibitors: For Whom, When, and How Long? aired Thursday June 15th on OMedLive. HCPs can watch top experts, Steven W. Pipe, MD, Stacy E. Croteau, MD, MMS and Kelly Tickle, MSN, APN, PPCNP-BC, PCNS-BC, CWON via streaming video, get the latest medical science and earn AMA PRA Category 1 Credit™. The program is now available to watch on-demand.
Another new aligned educational program will be available this summer – Spinal Muscular Atrophy: A New Era for Both Patients and Clinicians. The CME activity, Post-Treatment SMA Phenotypes and Multidisciplinary Care will air on July 13th at 12pm EST on NeuroSeriesLive. The patient educational program, Obtaining Support and Ongoing Care for Children with SMA after Gene Replacement Therapy, will be available in August. Keep your eye out for more information and updates regarding this important and timely tethered educational activity.
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. NORD is committed to the identification, treatment and cure of more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children.
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. For 37 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with over 300 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.
About PlatformQ Health
PlatformQ Health Education is the leading provider of interactive digital medical education for clinicians, patients and caregivers. To improve patient care, PlatformQ Health Education 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.