Resources & Support Groups

Home Resources & Support Groups

You are not alone in your journey with Guillain-Barré Syndrome. These carefully curated resources provide support, information, and connections to help you navigate your path to recovery.

National Organizations & Foundations

GBS/CIDP Foundation International

The leading organization dedicated to support, education, and research for Guillain-Barré Syndrome and related conditions.

Services Offered:

Patient support programs
Educational materials and webinars
Research funding and advocacy
Annual symposiums and regional meetings
Scholarship programs for patients and families

Contact Information:

Website: gbs-cidp.org
Phone: 610-667-0131
Email:info@gbs-cidp.org
Address: The Holly Building, 104 1/2 Forrest Avenue, Narberth, PA 19072

National Institute of Neurological Disorders and Stroke (NINDS)

Federal agency providing comprehensive medical information and research updates.

Website: nih.gov
GBS Information Page: Detailed medical information and current research
Clinical Trials Database: Information about ongoing studies

Support Groups & Communities

Online Support Communities

GBS Support Group on Facebook

Private group with over 15,000 members worldwide
Peer support from patients and families
Daily discussions and shared experiences
Moderated by volunteers with GBS experience

Reddit GBS Community (r/GuillainBarre)

Open forum for questions and support
Anonymous sharing options
Regular AMA sessions with medical professionals

Mighty GBS Community

Mobile app-based support network
Condition-specific discussion groups
Progress tracking tools

Regional In-Person Support Groups

Finding Local Groups:

Contact the GBS/CIDP Foundation for referrals
Check with local hospitals’ neurology departments
Search through the National Multiple Sclerosis Society (many groups welcome GBS patients)
Contact your state’s disability services office

Starting Your Own Group:

Contact the GBS/CIDP Foundation for startup guidance
Partner with local hospitals or community centers
Utilize social media to connect with local patients

Medical Resources

Specialized Treatment Centers

Centers of Excellence:

Many medical institutions have specialized neuromuscular programs with GBS expertise:

Johns Hopkins Neuromuscular Division (Baltimore, MD)
Mayo Clinic Neuromuscular Program (Multiple locations)
Massachusetts General Hospital Neuromuscular Center (Boston, MA)
Cleveland Clinic Neurological Institute (Cleveland, OH)
University of California San Francisco Neuromuscular Program

Finding Specialists:

Use the American Association of Neuromuscular & Electrodiagnostic Medicine directory
Contact your insurance provider for in-network specialists
Ask for referrals from your primary care physician

Emergency Medical Information

Medical Alert Resources:

MedicAlert Foundation: Medical ID bracelets and cards
Emergency contact information templates
Hospital communication cards explaining GBS

Critical Care Guidelines:

Respiratory monitoring protocols
Pain management strategies
Mobility and rehabilitation considerations

Educational Resources

Medical Literature & Research

PubMed Central

Access to peer-reviewed research papers
Latest clinical trial results
Treatment advancement updates

Cochrane Library

Evidence-based treatment reviews
Systematic analysis of treatment effectiveness

Patient Education Materials

GBS/CIDP Foundation Resources:

“Living with GBS” patient handbook
Recovery milestone guides
Family caregiver resources
Workplace accommodation guides

Hospital System Resources:

Cleveland Clinic patient education sheets
Mayo Clinic GBS information guides
Johns Hopkins recovery timelines

Rehabilitation & Recovery Support

Physical Therapy Resources

American Physical Therapy Association (APTA)

Find certified neurologic physical therapists
Patient education materials
Insurance advocacy resources

Specialized Rehabilitation Programs:

Inpatient rehabilitation facilities
Outpatient neurologic therapy centers
Home health therapy services
Aquatic therapy programs

Occupational Therapy Support

Equipment and Adaptive Devices:

National Multiple Sclerosis Society equipment loan programs
Local disability resource centers
Insurance coverage guidance for durable medical equipment

Speech-Language Pathology

For patients with swallowing or communication difficulties:

American Speech-Language-Hearing Association (ASHA) provider directory
Swallowing therapy specialists
Communication device resources

Financial & Legal Resources

Financial Assistance Programs

Pharmaceutical Assistance:

Patient assistance programs from IVIG manufacturers
Nonprofit medication access programs
State pharmaceutical assistance programs

Disability Benefits:

Social Security Disability Insurance (SSDI) guidance
Supplemental Security Income (SSI) information
State disability benefit programs
Veterans Administration benefits (for eligible veterans)

Healthcare Costs:

Hill-Burton Program (free/reduced-cost medical care)
Hospital charity care programs
Prescription assistance programs

Legal Resources

Disability Rights Organizations:

National Disability Rights Network
State Protection & Advocacy agencies
Americans with Disabilities Act (ADA) guidance

Employment Rights:

Equal Employment Opportunity Commission (EEOC)
Job Accommodation Network (JAN)
Family and Medical Leave Act (FMLA) information

Mental Health & Wellness Support

Counseling & Therapy Resources

Psychology Today Directory

Find therapists specializing in chronic illness
Filter by insurance and location
Patient reviews and specializations

National Association of Social Workers

Licensed clinical social worker directory
Support group facilitation resources

Crisis Support Resources

National Suicide Prevention Lifeline

Phone: 988
Website: suicidepreventionlifeline.org
24/7 crisis support

Crisis Text Line

Text: HOME to 741741
Free, confidential crisis support via text

Family & Caregiver Resources

Caregiver Support Organizations

National Alliance for Caregiving

Caregiver resource center
Support group directories
Advocacy and policy information

Family Caregiver Alliance

Caregiver education programs
Respite care resources
Financial and legal guidance

Resources for Children and Teens

When a Parent Has GBS:

Age-appropriate explanation materials
Children’s books about serious illness
Family counseling resources
School communication templates

Workplace & Educational Support

Workplace Accommodations

Job Accommodation Network (JAN)

Phone: 1-800-526-7234
Free consulting on workplace accommodations
ADA compliance guidance
Return-to-work strategies

Educational Support

Students with Disabilities:

Section 504 plan development
Individualized Education Program (IEP) guidance
College disability services offices
Academic accommodation strategies

International Resources

Global Organizations

GBS Support Group (UK)

Website: gbs.org.uk
UK-specific resources and support

Australian GBS Support Group

Website: gbsaustralia.org.au
Regional support networks

European Network of GBS Support Groups

Coordinated support across European countries
Multilingual resources

Emergency Preparedness

Medical Emergency Planning

Emergency Action Plan Components:

Current medication list
Medical history summary
Emergency contact information
Healthcare provider contact details
Insurance information
Advance directives

Natural Disaster Preparedness:

Medication storage and backup supplies
Medical equipment power backup plans
Evacuation planning for mobility-impaired individuals
Emergency communication plans

Research & Clinical Trials

Current Research Opportunities

ClinicalTrials.gov

Search for current GBS studies
Location-based trial searches
Eligibility screening information

GBS/CIDP Foundation Research Programs

Funded research initiatives
Patient registry participation
Research volunteer opportunities

Participating in Research

Benefits of Participation:

Access to cutting-edge treatments
Contribution to medical advancement
Comprehensive medical monitoring
Potential access to experimental therapies

Questions to Ask:

Study objectives and procedures
Potential risks and benefits
Time commitments required
Compensation and expense coverage

Technology & Apps

Health Management Apps

MyRA (My Recovery Assistant)

Progress tracking for neurological conditions
Symptom monitoring
Appointment scheduling
Medication reminders

Symple Symptom Tracker

Customizable symptom logging
Progress visualization
Healthcare provider sharing capabilities

Accessibility Technology

Voice Control Software:

Dragon NaturallySpeaking
Built-in voice control on smartphones and computers

Mobility Apps:

Wheelchair accessibility mapping
Public transportation accessibility
Parking assistance for disabled placards

Quick Reference Cards

Health Management Apps

Hospital Visit Checklist:

Questions to ask your medical team
Information to provide to healthcare providers
Rights as a patient
Insurance and billing considerations

Recovery Milestone Tracker:

Expected recovery timeframes
Functional improvement markers
When to contact your healthcare provider
Celebrating progress achievements

Contact Information Summary

24/7 Support Lines:

GBS/CIDP Foundation: 610-667-0131
Crisis Text Line: Text HOME to 741741
National Suicide Prevention Lifeline: 988

Key Websites:

GBS/CIDP Foundation: gbs-cidp.org
NINDS: ninds.nih.gov
Clinical Trials: clinicaltrials.gov

This resource directory is regularly updated to provide the most current information available. If you have suggestions for additional resources or notice outdated information, please contact us at support@guillain-barre-syndrome.com.