Get Involved: Volunteer with the Foundation

The Foundation always welcomes new volunteers! If you’ve been affected by GBS, CIDP, or a variant, then you understand how important it is to have access to information and support. Our volunteers are key members of the Foundation team, and are invaluable in helping the Foundation support patients and their families. There are a variety of ways for you to get involved, and we are happy to work with you to find a role that best suits your interests.

Patient Support

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 who are all united in support of our members. As many of you know from experience, having someone to talk to who understands what you are going through makes a world of difference. Our team of Liaisons–who are all either survivors/patients themselves or caregivers–volunteer to help in many ways, such as:

  • Hospital awareness & hospital visits (when applicable) – Sharing educational collateral with local hospitals, rehabilitation and physical therapy clinics, is a great way to raise awareness in your local community. When applicable, visiting patients, in a hospital setting, who are coping with GBS, CIPD or a variant, can offer much needed support.
  • Hosting local chapter meetings in person or virtual (when applicable) – Holding local chapter meetings for patients and caregivers is a great way to offer local support and further the Foundation mission of support and education.
  • Providing peer-to-peer support through phone, email, or zoom – A friendly, knowledgeable voice and a quick chat can make all the difference in someone’s recovery.
  • Submitting a patient or caregiver story – Our online story portal offers support and connection for both the reader and the storyteller. Simply sharing what you’ve been through, can give encouragement and relief to so many others.
  • Editorial language translations – As we expand our global footprint, we will be translating materials and presentations. Are you fluent in other languages? Lending your translation skills will greatly support the worldwide goals of the Foundation.

Topic and idea contributions to the newsletter – No better voice than that of the patient and caregivers themselves, when it comes to offering real life experience and advice for coping with GBS, CIDP or a variant. Do you like to write? We welcome patient and caregiver editorial content for our newsletters.

If you are interested in volunteering for patient support, please fill out the form at the end of the page.*