Questions from affected families prompts new interactive session on rare neurological disorder

Building on questions received during their first educational initiative for patients and families affected by chronic inflammatory demyelinating polyneuropathy (CIDP), PlatformQ Health and GBS|CIDP Foundation International are today pleased to announce a new video program that will be live on December 11th at 3pm ET on NeuroCareLive. The upcoming session will give families facing a diagnosis of CIDP the opportunity to interact with some of the nation’s leading experts as well as learn about available treatments such as IVIG, understand how side effects can be managed, and strengthen communication with healthcare providers.

This is the fourth collaboration between the two organizations – they designed three programs for clinicians and one for families from May 2018 to July 2019, each of which was available to attend on-demand for 12 months after the live premiere. The patient-oriented program received 215 questions from families on a variety of topics, not all of which could be addressed by panelists in the hour-long session, and more feedback was gathered in the post-program study.

“Survey responses and numerous questions asked in the initial program on CIDP underscored the need to continue to educate patients and caregivers and alleviate their concerns. There remain a lot of questions about treatment and response to treatment, particularly with IVIG, so the next program focuses on those themes,” explained Dr. Anne Roc, Vice President of Medical Education at PlatformQ Health. “With so much ground to cover on this rare neurologic disorder, I can see future programming continue on other topics, such as dealing with quality of life issues and the long-view of coping with CIDP.”

A poster about the results from the first programs was accepted and recently shared at the Rare Diseases and Orphan Products Breakthrough Summit hosted by the National Organization for Rare Disorders (NORD)®.

“The first patient program we collaborated on with PlatformQ Health was so engaging for our community,” noted Executive Director of the GBS|CIDP Foundation International Lisa Butler. “Not every family has easy access to CIDP specialists, so we’re looking forward to being able to bring out another opportunity to interact with experts this December.”

new accredited program about CIDP for professionals is currently available on NeuroSeriesLive. The original series and new sessions were supported educational grants from Grifols.

About GBS|CIDP Foundation International
GBS|CIDP Foundation International is a Philadelphia, PA-based, global, nonprofit supporting individuals and their families affected by Guillain-Barre’ syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and related conditions such as MMN. We are committed to providing opportunities for support and networking, referrals to insightful medical specialists, educational materials for the entire family, research funding and advocacy for legislation that directly affects our patient community. We are working toward a future where patients coping with this rare set of neurologic conditions do not suffer alone and that every person affected by GBS, CIDP, or related syndromes will have access to early and accurate diagnosis, appropriate treatment, and knowledgeable support services.

About PlatformQ Health
PlatformQ Health is the leading provider of interactive digital medical education for clinicians, patients and caregivers. To improve patient care, PlatformQ Health 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.