IIH Resources & Support
Find support organizations, online communities, educational materials, and assistance programs
⚠️ Emergency Symptoms
If you experience sudden severe vision loss, extreme headache with fever, or neurological symptoms, seek immediate medical attention at your nearest emergency department.
🌍 Major IIH Organizations Worldwide
Intracranial Hypertension Research Foundation (IHRF)
The only non-profit organization in the world devoted to supporting medical research of chronic intracranial hypertension. Provides education, support, and research funding.
IIH UK
UK charity with an extremely supportive online group of over 5,000 members. Provides information, support, and advocacy for IIH patients.
Brain Foundation Australia
Provides comprehensive information about intracranial hypertension, including symptoms, diagnosis, and treatment options for Australian patients.
IIH Hub
Comprehensive patient hub with educational resources, symptom trackers, and support tools for managing IIH. Created by healthcare professionals and patients.
The Brain Charity
Supports people with all neurological conditions including IIH. Offers practical help, emotional support, counselling, and social activities from their Liverpool centre.
💬 Online Support Communities
IIH Support Groups
Multiple Facebook groups provide non-judgmental forums to ask questions and share experiences with other IIH patients.
IH Australia
Official Facebook page for IH Australia, providing support and information for patients in Australia and New Zealand. Regular updates and community engagement.
Reddit Community
Reddit community provides anonymous support and discussion forum for IIH patients worldwide.
📚 Educational Resources
North American Neuro-Ophthalmology Society (NANOS)
Professional society providing patient education materials and physician directories for neuro-ophthalmological conditions including IIH.
National Eye Institute (NEI)
U.S. government institute providing reliable information about eye conditions and vision research, including IIH-related vision issues.
Leading Hospital Resources
Major medical centers provide patient education materials about IIH diagnosis and treatment.
💰 Financial Assistance
Patient Access Network (PAN) Foundation
Helps underinsured patients afford their prescribed medications through disease-specific assistance programs.
Additional Financial Resources
Various programs can help with medical costs:
- Hospital financial assistance programs
- Pharmaceutical company patient assistance
- Local charity care programs
- State disability programs
🌏 Regional Resources
🇨🇦Canada
- Canadian Organization for Rare Disorders (CORD) - National network advocating for rare disease patients
- Rare Disease Foundation - Connecting communities to transform lives
- Provincial health services often cover IIH treatments
🇪🇺Europe
- EURORDIS - European Organisation for Rare Diseases
- National rare disease organizations in each EU country
- European Reference Networks (ERNs) for rare diseases
🇳🇿New Zealand
- Rare Disorders NZ - Support and advocacy organization
- Regional hospital neurology departments
💡 Tips for Finding Support
- Join multiple support groups to find the right fit for you
- Look for local/regional Facebook groups in your area
- Ask your doctor about local support groups
- Connect with others who have similar symptoms or treatments
- Remember: You're not alone in this journey
⚠️ Important Reminder
While support groups and online communities provide valuable peer support, always consult with qualified medical professionals for diagnosis and treatment decisions. Online advice should never replace professional medical care.