Where to Find Support
In recalling her experience with immune-related side effects, one of our patient ambassadors expressed a stinging irony: “When I was at my weakest, I had to be my strongest advocate.”
It’s true that you may need to advocate for yourself; but you don’t have to do it alone. Below is a snapshot of some organizations that are dedicated to supporting patients. But it’s by no means comprehensive – there are many more groups that offer support. If you know of an organization you believe should be included in this list, please reach out and let us know.
Whenever you engage with patient organizations, be sure to keep your care team looped in – let them know where and how you’re reaching for support; they may have other organizations or avenues of support to suggest, as well.
Self-Advocacy Support
General Self-Advocacy & Healthcare Navigation
- Patient Advocate Foundation (PAF) — patientadvocate.org — Provides case management services and financial assistance, and directly teaches self-advocacy skills to patients and caregivers navigating the healthcare system. Its affiliate, the National Patient Advocate Foundation (NPAF), works on the policy and access side.
- Solace — solace.health — Connects patients with independent advocates who can join medical appointments remotely, review records and test results, and help prepare questions ahead of visits.
- Greater National Advocates (GNA) — gnanow.org — A hub connecting patients with independent advocates who help organize medical records, coordinate communication between providers, and translate complex medical information.
- AdvoConnection Directory / National Association of Healthcare Advocacy (NAHAC) — nahac.com — Directories for finding a private, paid patient advocate.
Cancer-Specific Advocacy & Navigation
- One Cancer Place — onecancerplace.org — A nonprofit founded by cancer patients and survivors providing guidance and education so patients and caregivers can advocate for themselves and others. Its “KAPA Co-Pilots” program pairs newly diagnosed patients with trained patient advocates for navigation support, alongside an education arm (The INSTITUTE) and private peer community groups.
- AIM with Immunotherapy — aimwithimmunotherapy.org — Provides information-packed Patient Action Plans, comprehensive, drug-specific guides that walk patients through what to expect on a given immunotherapy, including how the medication is administered and what to do — mild reaction versus severe, emergency-level reaction — if a side effect occurs. Plans exist for individual drugs (pembrolizumab, nivolumab, ipilimumab, and others), so patients can go straight to the plan matching their own treatment.
- CancerCare — cancercare.org — A national nonprofit providing free, professional support services for anyone affected by cancer, including case management from oncology social workers.
- Triage Cancer — triagecancer.org — Offers free one-on-one help with health insurance, disability insurance, employment, finances, medical decision-making, and estate planning for cancer patients and caregivers.
- Cancer Support Community — cancersupportcommunity.org — Provides education, support groups, and a helpline for navigation questions.
Condition Support and Patient Communities
General Support
- CancerCare — cancercare.org — Free counseling, support groups, and navigation help from oncology social workers. One of the most patient-focused organizations out there, with practical help on communicating with your care team, getting second opinions, and managing the emotional weight of a diagnosis.
- Cancer Support Community — cancersupportcommunity.org — The largest professionally led nonprofit network of cancer support worldwide, with 175 locations including Gilda’s Club centers. They deliver over $50 million in free support services annually and run a toll-free helpline.
- Cancer Nation — canceradvocacy.org — Specifically publishes a guide called Becoming a Self-Advocate, which is directly aimed at helping patients feel empowered rather than overwhelmed. Strong focus on patient rights and self-advocacy skills.
- American Cancer Society — cancer.org — Trained cancer information specialists available 24/7 by phone (1-800-227-2345) and on weekdays via online chat, connecting patients and caregivers with resources at every step of the cancer journey.
Bladder Cancer
- Bladder Cancer Advocacy Network (BCAN) — bcan.org — The only national advocacy organization devoted exclusively to advancing bladder cancer research and supporting those impacted by the disease. Offers peer support, patient guides, and a “BCAN Connection” program.
- Fight Bladder Cancer — fightbladdercancer.co.uk — UK-based but widely used internationally; strong on peer support forums and patient-to-patient guidance for navigating treatment decisions.
Breast Cancer
- Susan G. Komen — komen.org — Their Breast Care Helpline (1-877-465-6636) provides information on treatment options, clinical trials, and local resources, and connects patients to culturally responsive patient navigators. Also offers financial assistance for patients in active treatment.
- Living Beyond Breast Cancer (LBBC) — lbbc.org — Free educational programs, a peer volunteer helpline, and private support communities tailored by diagnosis type and life stage (including young women and metastatic patients). Particularly valued for the depth of its side-effect and treatment guidance.
Colorectal Cancer
- Fight Colorectal Cancer (Fight CRC) — fightcolorectalcancer.org — The leading colorectal cancer advocacy organization, offering medically reviewed patient resources, support, and community so no one faces the disease alone. Particularly strong on self-advocacy tools and policy engagement.
- Colorectal Cancer Alliance — colorectalcancer.org — Peer navigation, a helpline, and a grassroots advocacy program called Allies in Action. Extensive survivorship and caregiver support resources.
Endometrial Cancer
- Foundation for Women’s Cancer — foundationforwomenscancer.org — The official foundation of the Society of Gynecologic Oncology. Offers a free Endometrial Cancer patient guide (available in English and Spanish) and educational programs.
- SHARE Cancer Support — sharecancersupport.org — Runs a dedicated Uterine Cancer Helpline (844-582-6005), support groups, and peer mentoring specifically for women with gynecologic cancers. Services available in multiple languages.
Head and Neck Cancer
- SPOHNC (Support for People with Oral, Head & Neck Cancer) — spohnc.org — Dedicated to raising awareness and meeting the needs of oral and head and neck cancer patients through resources and publications, with a focus on empowering patients with essential programs.
- Head and Neck Cancer Alliance — headandneck.org — Patient education, clinical trial information, and a support network for those navigating HPV-related and other head and neck cancers.
Hepatocellular Carcinoma (HCC)
- Liver Cancer Connect / Hepatitis B Foundation — hepb.org/research-and-programs/liver — A dedicated program providing individuals and families with information and support when facing primary liver cancer, including webinars, a specialist directory, and guidance on talking to your healthcare team.
- Blue Faery: The Adrienne Wilson Liver Cancer Association — bluefaery.org — Focused on preventing, treating, and curing HCC through research, education, and advocacy. Offers free HCC patient resource guides, an online patient and caregiver community, and a website translated into 12 languages.
Melanoma
- Melanoma Focus — melanomafocus.org — Helpline, patient guides, and a clinical trial finder. Provides information on rare forms of melanoma.
- Melanoma Research Foundation — melanoma.org — Patient guides, a dedicated nurse navigator, peer-to-peer matching, online community forums, and a clinical trial finder. Strong focus on newly diagnosed patients.
- AIM at Melanoma — aimatmelanoma.org — Side effect management guides, on-demand webinars, a specialist finder, and a state-by-state support directory. Also offers direct access to medical experts via online chat.
Non-Small Cell Lung Cancer (NSCLC)
- GO2 for Lung Cancer — go2.org — A free HelpLine connects patients with experienced professionals for one-on-one support, education, and referrals. Their LungMATCH program helps patients understand treatment options, access biomarker testing, and find clinical trials.
- LUNGevity Foundation — lungevity.org — Peer-to-peer mentorship, survivorship resources, and a lung cancer helpline (1-844-360-5864). Particularly strong on early detection and biomarker education.
Renal Cell Carcinoma (RCC)
- Kidney Cancer Association — kidneycancer.org — Organizes online peer-led meetings for those impacted by kidney cancer, and runs a Patient Navigator Program offering specialized support with care and finances.
- KCCure — kccure.org — An evidence-based, patient-driven organization that provides peer support, accessible information, and empowers patients to drive research funding priorities. Runs subtype-specific private support communities (metastatic RCC, papillary, chromophobe, etc.).
Tips When Seeking a Specialist
Your oncologist and oncology nurse are your first call for any new or worsening symptom during immunotherapy, even something that seems unrelated to cancer, like a headache, joint ache, or loose stool. Immune-related side effects can look like ordinary illnesses at first, and timing matters: catching them early generally means a faster, more effective treatment. Your oncology team can either manage a mild side effect directly or refer you to the right organ specialist.
If for some reason your oncologist is not willing or able to refer you to a specialist themselves, and you find yourself in the position of choosing one yourself, you’ll want to do so carefully. Not every organ specialist has experience with immunotherapy toxicity — a rheumatologist who treats immune-related arthritis from checkpoint inhibitors approaches it differently than one treating standard rheumatoid arthritis.
Communicate with your oncologist and oncology nurse every step of the way to keep them looped into the process. They’ll need to work closely with the specialist, so it’s important to lay the groundwork for a healthy collaboration.
What to Look For in a Specialist
- Experience treating immune-related side effects (called immune-related adverse events, or irAEs) specifically, not just the general organ condition (for example, checkpoint-inhibitor colitis rather than IBD generally).
- Willingness to communicate directly with your oncology team, since irAE treatment decisions often affect whether immunotherapy continues, pauses, or stops.
- Familiarity with steroid and immunosuppressive treatment protocols used for irAEs, which can differ from standard treatment of the same organ condition.
- Comfort managing your case alongside oncology rather than in isolation.
- Practical accessibility: appointment availability, telehealth options, and response time for urgent symptoms.
Questions to Ask a Prospective Specialist
- How many patients with immunotherapy-related side effects have you treated?
- Will you be in direct contact with my oncologist, and how often?
- What’s your usual approach — steroids first, and what happens if those don’t work?
- Could this treatment affect whether I can continue immunotherapy?
- What symptoms should prompt me to call you versus go to the ER?
- Is there a way to reach you or your team quickly if symptoms worsen between appointments?
Other Ways to Find the Right Care
- Ask about academic and NCI-designated cancer centers. Larger academic cancer centers are more likely to have a formal irAE program; ask your oncologist which nearby centers do.
- Consider a second opinion for complex cases. A second opinion from another cancer center is reasonable, especially for a severe or unusual irAE, or if your current team doesn’t have access to the right specialist.
- Use your insurance care coordinator. If your oncology team can’t easily locate the right specialist, your insurance company’s care management line can sometimes help identify in-network specialists with relevant experience.
Important: The organizations listed on this page are included for informational purposes only. Their inclusion does not imply partnership, affiliation, or endorsement by The Foundation for Autoimmune & Cancer Support. We do not verify, guarantee, or take responsibility for the accuracy of the information provided by these organizations, nor can we guarantee the quality of care or experience you may have with them. We encourage you to independently research and confirm details directly with each organization before making decisions about your care.
Lived Experience: Stories From Patients and Care Teams
We'd Like to Thank Our Generous Sponsors
Lorem ipsum dolor sit amet consectetur adipiscing elit sem bibendum iaculis odio, hendrerit lobortis penatibus phasellus non vivamus arcu gravida integer sodales, sociis laoreet feugiat class auctor.
