Call on Airlines to Respect People with Rare Conditions and their Medical Equipment
The GBS|CIDP Foundation International acknowledges the urgent need for airlines to respect and improve their treatment of people with rare conditions and their medical equipment while at airports and flying. Too often, mobility devices, wheelchairs, and other medical equipment are mishandled or damaged by airline staff due to neglectful treatment and a lack of understanding…
Plasma Awareness Event at Meredith College
Written by Ellie Herman, Advocacy Coordinator To recognize International Plasma Awareness Week and educate their community about the need for plasma donations, students and staff at Meredith College in Raleigh, North Carolina held a Project Plasma awareness event on October 4th. Meredith’s Marketing and Communications Office and Student Wellness Organization hosted a tabling event where…
Foundation Hosted Patient Listening Session on Guillain-Barre Syndrome with The FDA
On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and…
Rare Disease Day 2020
Giving Hope to our Global Rare Community for #Rarediseaseday Rare Disease Day (RDD) takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year the GBS|CIDP Foundation International has several RDD activities…
May is GBS|CIDP Awareness Month
Be your own best advocate. Did you know that Medicare part B can restrict your location of care for your IVig treatments? Or that each year, your voice can influence Congress on important issues such as funding the National Institutes of Health’s research into GBS and CIDP? Whether you are a patient, caregiver, friend, or…
GBS|CIDP Foundation Launches Rare Disease Day Campaign
Teach One. Be One. Be a Champion for Rare Disease. February 28, 2018 will be the eleventh international Rare Disease Day. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities. This year the GBS|CIDP Foundation is encouraging you to join the cause and TEACH someone about GBS,…
GBS|CIDP Foundation International Named to the 2016 Classy 100
GBS|CIDP Foundation International Named to the 2016 Classy 100 Recognized as a consistent growing nonprofit on the leading online fundraising platform in 2016 Narberth, Pennsylvania – GBS|CIDP Foundation International made this year’s Classy 100 list, an annual compilation of the growing nonprofits on Classy, the world’s leading online fundraising platform for social enterprises. Classy…