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.  Read More

In our latest partnership newsletter, we highlight some of our recent educational initiatives that address clinical trial equity, tethered education, strategies to improve CME outcomes and more! Read More

PlatformQ Health presents a poster at the 2022 ASCO Quality Care Symposium on educational outcomes in Urothelial Carcinoma. Read More

Educational outcomes from “Evolving Treatment Approaches for Generalized Myasthenia Gravis to Reduce Disease Burden and Improve Daily Living" accepted at the MGFA Scientific Session at the 2022 AANEM Conference. Read More

People of color, the elderly, as well as those living in rural areas are disproportionately affected by cancer, yet are severely underrepresented in cancer clinical trials. The lack of diversity in clinical trials leaves these patients at a severe disadvantage because there is little insight into the safety and effectiveness of therapies for them. Read More

When confronting a frightening condition like bladder cancer, patients may fall into a rabbit hole of information online. It can be challenging to discern what sites to trust and where to turn. Not only are patients facing concerns about their own survival, but also worries over sensitive issues such as bladder function and sexual health. In this situation, it can be difficult for patients to open up to providers about their fears. Read More

Cell and gene therapies are transforming the course of disease treatment, from gene replacement that extends the lives of infants with spinal muscular atrophy, to CAR T-cell therapies that bring durable remission to patients with difficult-to-treat blood cancers. Read More

Our Summer Partnership Newsletter explores some of the latest and trending medical education topics like the patient voice in CME, tethered education, the future of gene and cell therapy, improving clinical trial access, results from our recent patient survey and more! Read More

Primary mitochondrial disease (PMD) is often missed by clinicians due to the broad range of clinical presentations and genetic etiologies. Our recent program "Progressive Myopathy: Could it be a Genetic Mitochondrial Disease?" focused on diagnosing this condition in infants, children, and adults who present with progressive muscle weakness; understanding the diagnostic workup; and manifestations of thymidine kinase 2 (TK2) deficiency.  Read More

Enhancing CME programs with patient voice is an effective strategy for helping providers retain what they’ve learned. National Organization of Rare Disorders Chief Medical and Science Officer Edward Neilan, MD, PhD noted, “when it comes to educational materials, hearing from the patient makes it much more memorable, much more engaging, and a longer lasting educational contribution."  Read More

The 2022 ASCO Annual Meeting is a place where cutting-edge research spanning all major disease sites comes together so leaders in the field can stay up-to-date on clinical trials, the Read More

Researching clinical trials is a formidable challenge. Figuring out which trials offer the most promise to a particular patient is a monumental job, with life-altering implications. With hundreds of thousands of registered clinical trials across the country, it’s no wonder most people are overwhelmed at the prospect of it all. Read More