🤝 Support Groups

You're not alone. Connect with others who truly understand what you're going through — patients, survivors, caregivers, and families.

💙 Why Support Groups Matter

A GBM diagnosis can feel isolating. Support groups provide:

  • Understanding: People who truly "get it" — no explanations needed
  • Practical advice: Tips from those who've been through it
  • Emotional support: A safe place to share fears, frustrations, and wins
  • Information: Learn about treatments, trials, and doctors from patient experiences
  • Hope: Meet long-term survivors and learn what they did differently
  • 24/7 availability: Online groups are there when you can't sleep at 3 AM
✓ Studies show: Cancer patients who participate in support groups report better quality of life, reduced anxiety and depression, and feel more empowered in their care.

📱 Facebook Groups

Facebook has the most active GBM communities. Most are private — your posts won't appear on your main feed.

Specialized Facebook Groups

  • DIPG/DMG Parent Support Group — For parents of children with diffuse intrinsic pontine glioma
  • Low Grade Glioma Support — For grade 2 gliomas (which can progress to GBM)
  • Brain Tumor Caregivers — Specifically for caregivers
  • Young Adults with Brain Tumors — For patients in their 20s-30s
💡 Tips for Facebook groups:
  • Search before asking — many questions have been answered
  • Use the "search this group" feature
  • Be specific about tumor type, location, and treatments when asking questions
  • Share your story — it helps others and helps people give better advice

🔷 Reddit Communities

Reddit offers more anonymous discussion. Good for asking questions you might not want tied to your identity.

r/braincancer

Reddit
~10,000+ members

Main brain cancer subreddit. Active community, covers all brain tumor types including GBM.

Visit Subreddit →

r/glioblastoma

Reddit
~3,000+ members

Specifically focused on GBM. Good for detailed treatment discussions.

Visit Subreddit →

r/CancerCaregivers

Reddit
~5,000+ members

Support for caregivers of any cancer type. Helpful for emotional support.

Visit Subreddit →

💡 Why Reddit can be valuable: You can post anonymously, search past discussions, and find very detailed treatment experiences. The community tends to be research-focused and good at finding studies and information.

💬 Discord Servers

Discord offers real-time chat. Good for quick questions and ongoing conversations.

Brain Tumor Support

Discord

Real-time chat community for brain tumor patients and caregivers. Multiple channels for different topics.

Search "brain tumor support" on Discord or ask in Reddit/Facebook groups for current invite links.

Cancer Support Discord

Discord

General cancer support with channels for different cancer types including brain tumors.

Links change — current invites shared in Reddit cancer communities.

⚠️ Note on Discord: Discord servers can be less moderated than Facebook groups. Verify medical information with your care team. Server invite links may expire — check Reddit or Facebook for current links.

🏥 In-Person Support Groups

Meeting others face-to-face can be powerful. Many hospitals and organizations offer local groups.

How to Find Local Groups

  • Ask your cancer center: Most have social workers who know local resources
  • Hospital neuro-oncology department: Often run support groups
  • American Brain Tumor Association: Has a support group directory
  • Cancer Support Community: Offers free support groups nationwide
  • National Brain Tumor Society: Events and local connections

ABTA Support Group Finder

Search for brain tumor support groups by location.

Find Groups →

Cancer Support Community

Free support groups at locations across the US. Also offers online groups.

Find Locations →

Gilda's Club

Free cancer support communities in many cities.

Learn More →

Virtual Support Groups

If no local groups exist or you can't travel, many organizations offer video call support groups:

💜 Caregiver-Specific Support

Caregivers need support too — often even more than patients.

Caregiver Action Network

Resources and peer support for family caregivers of any condition.

Visit Site →

✓ For caregivers: Don't wait until you're burned out to seek support. Connecting with others early helps you build resilience and learn coping strategies before you desperately need them.

🌟 Survivor Communities

Connecting with long-term GBM survivors can provide hope and practical wisdom.

  • Musella Foundation Survivorship Group — Connects newly diagnosed with survivors
  • Our Survivors Page — Stories and what they did differently
  • Ask in Facebook groups — Many long-term survivors participate and share their protocols
💡 Finding survivor stories: In Facebook groups, search for posts with "5 years," "long-term survivor," or "NED" (no evidence of disease). Many survivors share their complete treatment histories.

📞 Crisis Support

If you're struggling with overwhelming emotions, these resources offer immediate help:

  • Cancer Support Community Helpline: 1-888-793-9355
  • American Cancer Society: 1-800-227-2345 (24/7)
  • Crisis Text Line: Text HOME to 741741
  • National Suicide Prevention Lifeline: 988

It's normal to feel overwhelmed, scared, or hopeless at times. Reaching out for help is a sign of strength, not weakness.

🛡️ Staying Safe Online

Support groups are generally wonderful, but keep these guidelines in mind:

  • Verify medical information with your oncology team before acting on advice
  • Be cautious of miracle cures — if it sounds too good to be true, it probably is
  • Protect your privacy — don't share full names, addresses, or financial information
  • Watch for scams — legitimate groups don't ask for money
  • Take breaks — constant cancer content can be overwhelming
  • Balance hope and realism — survivor stories are inspiring but everyone's journey is different
⚠️ Remember: Anecdotes aren't evidence. What worked for one person may not work for you. Always discuss treatment decisions with your medical team.

🚀 Getting the Most from Support Groups

When Joining

  • Introduce yourself — share your story, diagnosis date, current treatment
  • Read the group rules
  • Spend time reading before posting heavily

When Asking Questions

  • Be specific: tumor location, grade, molecular markers if known
  • Mention what treatments you've tried or are considering
  • Use the search function first — common questions have been answered

When Supporting Others

  • Share your experience without giving medical advice
  • Use "in my experience" language
  • Offer empathy before suggestions
  • Celebrate wins with others — it matters

⚠️ Important Reminder

Support groups are for emotional support and shared experiences, not medical advice. Always verify treatment information with your oncology team. What works for one person may not be appropriate for your specific situation.