In 2017, a nationwide survey of US CIDP patients was conducted to assess the impact of disease-related disability and treatment on lifestyle and work activities. Approximately 3250 individuals aged ≥18 years, recruited by the GBS|CIDP Foundation and self-reported to have CIDP, were invited to complete an online survey; of these, 475 completed the survey and their responses were used to assess disease and treatment burden.
Community News
Clovis, CA Walk & Roll Chair in the News
On March 4, the Fresno BEE published “Rare illness left this Clovis man paralyzed. Now he’s helping others,” featuring GBS|CIDP Foundation’s volunteer, Rob Vasquez of Clovis, CA. The Clovis Walk & Roll, March 9, hosted by Rob, is the first of the 2019 Walk & Roll season!
See Fresno Bee Video and Article
One-Day Regional Meetings Are Back for 2019
A little spirit of a chapter meeting & a taste of a symposium – these one day conferences will offer support, education, research updates and opportunities for patient advocacy. Each meeting will bring together local physicians, patients, caregivers and loved ones for a day of sharing, learning and connecting. Registration is $40, including all sessions, breaks & boxed lunch. (Does not include accommodations). For more information contact Kelly McCoy.
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2019 Colorado Springs One-Day Regional Conference
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2019 Indianapolis One-Day Regional Conference
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2019 Boston One-Day Regional Conference
Special Symposium Discount Extended to September 1, 2018!
Join Us! November 1-3 2018! Symposium 2018 will feature a wide array of presentations and workshops led by our best medical professionals, and will offer a unique opportunity for those affected by GBS, CIDP, and variants to meet with other patients and families from around the world.
Infusion Nurse Joins 2018 Symposium Team of Presenters
Infusion nurse, Amy Clarke will be joining our roster of 2018 Symposium presenters with a brand new session, All About Infusion. She will be discussing the infusion process from A to Z, and is happy answer all of your questions. You will leave the Symposium feeling informed and comfortable with treatment options, plans and procedures, with regard to IVIG treatment.
Amy Clarke is a registered nurse and has been in the specialty and home infusion space since 1994.
Ms. Clarke has a passion for immune globulin therapy having done over 2000 intravenous and subcutaneous infusions to date. Working with home infusion pharmacy in the 1990’s it became quickly evident that IVIG was often not well understood by nursing staff, pharmacies, payers, and in many instances the physicians themselves. Amy has provided multiple presentations on IVIG and SCIG administration specifics, including CE presentations for the National Home Infusion Association (NHIA); Infusion Nursing Society (INS) and the Immunoglobulin National Society (IgNS). Amy is currently Director of Nursing Clinical Program Services for Diplomat Pharmacy’s Specialty Infusion Group and is the IgNS president emeritus for the 2016-2018 term.