Doctor, How Do You Know I Have CIDP?
Produced in collaboration with GBS | CIDP Foundation International
Support for this patient education program was provided by Grifols, CSL Behring, Pfizer, and Takeda.
Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is frequently misdiagnosed as other neurologic conditions. When there is a misdiagnosis, it can have a significant impact on the lives of patients and their caregivers. Recently, new guidelines have been published to help clinicians identify symptoms early and guide selection of the best medications for patients with CIDP. Equally important, the guidelines encourage patients and their caregivers to become more involved in the management of CIDP. Join a patient-focused panel of CIDP experts and patients for a one-hour online presentation, “You Have CIDP…Now What?”.
Emerging agents and new immunoglobulin formulations are under investigation in clinical trials and may help optimize care for patients who do not easily tolerate other formulations. Overall, it is important that patients and caregivers get on the same page with the care team to select a treatment specific to their symptoms and healthcare needs.
Learning Objectives
- Become familiar with the requirements from the new guidelines to diagnose and manage CIDP to shorten the time to diagnosis and become involved in treatment decisions
- Discuss treatment goals and options with your health care provider, and make appropriate changes to your regimen when needed
- Review non-drug related management strategies that you can implement to best benefit from your treatment
- Describe treatment options that are currently in clinical trials for CIDP, including new immunoglobulin formulations and targeted agents
The panel will answer common patient questions during the live session, such as:
- When/how should I ask my provider for an alternative treatment?
- What side effects do I need to be aware of with these newer therapies?
- What steps should I take if I feel my doctor is not addressing my needs?
- How can I get connected to a CIDP support group?
Following the program, you will have the chance to help others by completing a survey and sharing your experiences with CIDP, such as what barriers you faced when seeking care, accessing appointments, or dealing with other conditions associated with CIDP. Your feedback will shape future education, while informing doctors and other healthcare professionals of common issues faced by patients with CIDP.
Sessions
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Know Your Treatment Options
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CIDP – Taking Care of Yourself
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Preparing for a Future with CIDP
Speakers
Jeffrey Allen, MD
Associate Professor
University of Minnesota
Jeffrey Allen is an Associate Professor in the Department of Neurology at the University of Minnesota, Minneapolis, MN. He completed his neurology residency training at Tufts University, and neuromuscular fellowship at Harvard. Dr. Allen’s research has focused on exploring the diagnosis and treatment of inflammatory neuropathies. He serves on the GBS/CIDP Foundation International Global Medical Advisory Board as well as the Inflammatory Neuropathy Consortium (INC) board.
Lisa Butler
Executive Director, GBS/CIDP Foundation International
Lisa Butler is the executive director of the GBS/CIDP Foundation International in Narberth, Pennsylvania. Ms Butler has a 10-year career in marketing and event planning for nonprofit organizations. Before assuming her current position as executive director, she managed the Foundation’s marketing and development programs, and was recognized by Patient Services, Inc. (PSI) with the 2016 Extraordinary Support Award. Ms Butler first of learned of the Foundation in 1992 (prior to joining the staff in 2013) when her father-in-law was diagnosed with Guillain-Barre syndrome (GBS).Ten years later, her son, Stuart, was diagnosed with GBS. Following Stuart’s recovery, she became the parent liaison for the Foundation for “parents with children diagnosed with GBS”.
Dave Rosner
CIDP Patient
Dave Rosner is 68 years old and lives on Long Island, New York. He is married to his best friend, Sue, and has three amazing daughters. Dave is the senior vice president of procurement for a company he has been with for over 45 years. He currently runs a mentorship program where high school graduates are hired and prepared for success within his company. Dave is honored to serve on the Board of Directors of the GBS|CIDP Foundation. He has been living through the ups and downs of CIDP for 10 years and is happy to be able to offer insight into living with CIDP. Dave enjoys wood working, riding electric bikes, kayaking, and simply taking a walk when he can.
Michele L. Dearing
Interview participant, Patient with CIDP