FOR THE COMMUNITY

Introducing
GBS | CIDP Foundation International

Get to know GBS | CIDP Foundation International, a great resource for people living with CIDP and their caregivers

The GBS | CIDP Foundation International is dedicated to improving the quality of life for individuals and families affected by GBS (Guillain-Barré syndrome), CIDP (chronic inflammatory demyelinating polyneuropathy), and related conditions. Their unwavering commitment to the patients they serve is built on 4 pillars: support, education, research, and advocacy.

When was the GBS | CIDP Foundation International founded?

The GBS | CIDP Foundation International, a nonprofit organization, was founded by Estelle and Robert Benson in 1980. Robert (Bob) Benson was diagnosed with GBS in November of 1979. They vowed that if Bob survived, they would begin a support group for other GBS patients and their families, so that no one would have to go through this alone.

How many members does the GBS | CIDP Foundation International have?

Today, the foundation has become an international organization of 30,000 members.

What area does the GBS | CIDP Foundation International organization operate in?

The GBS | CIDP Foundation International office is located in Conshohocken, PA, but it is a leading global nonprofit organization with 200 chapters in 49 countries—all of them dedicated to providing support and assistance to patients with GBS or CIDP and their families.

How to get involved

How to get involved How to get involved How to get involved

What resources does this advocacy organization provide to its members, and what can a new member expect when they join?

The GBS | CIDP Foundation International offers both virtual and in-person opportunities to connect with healthcare professionals, inspiring thought leaders, volunteers, legislators, and industry leaders who are giving a voice to patients—and, of course, opportunities to connect with other patients and caregivers. The Community Connections program is a monthly mix of supportive Zoom coffee chats, “Ask the Expert” webinars, and local chapter meetings that are either in person or virtual.

How can people in the CIDP community get in touch with the foundation’s leaders in their area so they can get involved?

Reach out through their website at gbs-cidp.org/about/contact-us/ or give them a call at (610) 667-0131. Connect with the GBS | CIDP Foundation International on Facebook, Twitter, LinkedIn, and Instagram. They’d love to hear from you!

Does the GBS | CIDP Foundation International include caregivers as members, and if so, how are they involved with the organization?

Yes, everyone is welcome! They specifically have virtual and in-person opportunities for caregivers to connect and form a community.

What are ways that people can contribute to this advocacy organization? Are there any urgent needs?

The foundation always welcomes new volunteers! With rare diseases, it’s easy to feel alone, but the foundation is committed to building an inclusive community of patients, caregivers, family members, and medical professionals that are all united in support of their members. Project Plasma is an initiative created for college students who are interested in bringing awareness about plasma donation to their campuses. To encourage more donations, the foundation is looking for students or student groups to create plasma awareness campaigns at their schools to ask their peers to become plasma donors.

Raising awareness for CIDP

Raising awareness for CIDP Raising awareness for CIDP Raising awareness for CIDP

Does the GBS | CIDP Foundation International host any annual events to raise awareness for CIDP?

GBS | CIDP Symposium: The symposium is a 3-day educational event, including sessions led by a world-renowned team of medical and wellness professionals specializing in healthcare for rare neurological conditions. Not only does the symposium provide the opportunity to learn more about the conditions, but it provides patients and caregivers the chance to connect with individuals who understand the challenges they are going through in their everyday lives.

GBS | CIDP Foundation International Walk & Rolls: The “Walk & Roll” was created for friends, families, and volunteers to participate in a fun and proactive way to raise awareness, show support, make memories, and build a network of communities around the world.

The Virtual Summit is a FREE, easily accessible event, featuring the very best practices for navigating the journey through GBS, CIDP, MMN (multifocal motor neuropathy), or variant conditions.

For more about the GBS | CIDP Foundation International, check out their full website here

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