Spotlight on Rare Cancers: Advancing Novel Therapy and Patient Centered Management

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PlatformQ Health and the National Organization for Rare Disorders produce 9 rare disease-focused virtual clinician education activities.

"It is one of our top priorities to continue to create reliable & engaging rare disease video education for all types of clinicians, led by top experts, all while being shaped by the patient voice. That is why we are proud to be able to collaborate with NORD to host the first Rare Cancer Congress."

PlatformQ Health and the National Organization for Rare Disorders (NORD®) are excited to be holding the first annual, multi-disease Rare Cancer Congress. The NORD Rare Cancer Coalition, composed of 27 rare cancer-specific member organizations, aims to unify people living with rare cancers and strengthen its members through capacity building, networking, and peer-to-peer mentoring.

There are 7,000 known rare diseases; of those, hundreds are classified as rare cancers. Significant challenges exist for these populations including delays in diagnosis, a paucity of treatment options and guidelines, suboptimal clinical outcomes, less than timely access to specialists, limited clinical trials, and inadequate access to information and support for patients.

Clinicians are tasked to diagnose these patients, facilitate the right care, and provide treatment options, including clinical trials. The American Society of Clinical Oncology (ASCO) has even identified in a recent ASCO in Action podcast, that “increasing precision medicine research and treatment approaches in pediatric and other rare cancers” is one of their top eight priorities for 2020.

The Rare Cancer Congress, is two-day event being held on October 28th and November 12th, brings together and educates community-based clinicians who don’t often see patients with rare disorders, along with specialists who are more familiar with treating the rare community. The Congress will consist of interactive, expert-led discussions that aim to increase knowledge, competency and collaboration when diagnosing patients, as well as reduce the time to diagnosis, personalize therapy selection and administration, and integrate new therapies with the goal of balancing efficacy and side effects of available options.

“Through our partnership with PlatformQ Health, we are filling gaps in rare disease education and developing additional CME resources to reach a broader audience through web-based education. We are thrilled to be able to address universal issues related to rare diseases as well as topics related to specific diseases and categories such as rare cancers,” said Rebecca Aune, Director of Educational Initiatives for NORD.

During the event, the PQH production team will facilitate interactive sessions, including case based problem-solving strategies to incorporate both patient-centered and team-based approaches. Additionally, they will provide learners with resources to facilitate shared decision-making with their patients and to assist in navigating their disease.

“Having NORD as a partner has enabled us to continually help clinicians better identify, diagnose, and treat rare conditions. It is one of our top priorities to continue to create reliable and engaging rare disease video education for all types of clinicians, led by top experts, all while being shaped by the patient voice. That is why we are so proud to be able to collaborate with NORD to host the very first Rare Cancer Congress,” shares Robert Rosenbloom, CEO of PlatformQ Health.

Critical topics covered in the Rare Cancers Congress program will include resolving diagnostic delays, recently-approved and emerging agents (including targeted therapy and immunotherapy), late-stage clinical trials, refining guideline-adherent care, adverse event management strategies, and patient-centered care. Attendees can earn CME credits and ABIM MOC points through these educational sessions.

Day 1 of NORD Rare Cancers Congress on 10/28
4 CME and ABIM MOC Credits in Rare Blood Disorders, Leukemias, and Lymphomas

  • Session 1 at 11:30am ET on OMedLive - Cold Agglutinin Disease (CAD): The Role of the Complement Pathway in Treating a Rare Autoimmune Hemolytic Anemia
  • Session 2 at 12:30pm ET on OMedLive - Addressing the Challenges of Peripheral T-Cell Lymphoma Management
  • Session 3 at 1:30pm ET on OMedLive - Risk-Based Approach for Treatment of Intermediate Myelofibrosis
  • Session 4 at 2:30pm ET on OMedLive - Managing Relapsed/Refractory Hairy Cell Leukemia in the Community Setting

Register for the event now on OMedLive!

Day 2 of NORD Rare Cancers Congress on 11/12
5 CME and ABIM MOC Credits in Rare Solid Tumors

  • Session 1 at 9:00am ET on OMedLive - A Critical Update for the Multidisciplinary Team in Differentiating and Tailoring Management of Sarcomas
  • Session 2 at 11:00am ET on OMedLive - Where are we Headed in Thyroid Cancer? New and Emerging Treatment Approaches
  • Session 3 at 11:30am ET on OMedLive - All About NETs: Disease Pathway, Treatment, and Clinical Trials for GEP-NETs, Pheochromocytoma, and Paragangliomas
  • Session 4 at 12:30pm ET on OMedLive - Reducing Diagnostic Challenges and Expanding Treatment Options for Advanced GIST
  • Session 5 at 1:30pm ET on OMedLive - Molecular Profiling and Targeted Therapies Shifting the Paradigm for Cholangiocarcinoma (Bile Duct Cancer)

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 330 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.

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Lauren Alford
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