National Patient Organizations
Mesothelioma Applied Research Foundation (MARF)
The leading nonprofit organization dedicated to eradicating mesothelioma. MARF funds mesothelioma research, provides patient support services, runs a Patient-to-Patient support program connecting newly diagnosed patients with mesothelioma survivors, and hosts an annual international symposium on mesothelioma. Offers a free patient navigator service.
Asbestos Disease Awareness Organization (ADAO)
Patient advocacy organization focused on asbestos ban legislation, public education, and support for asbestos disease victims including mesothelioma patients. Hosts an annual international conference on asbestos. Provides patient community resources and advocates for stronger asbestos regulations.
Alliance for Asbestos Reform
Coalition focused on asbestos policy reform and support for asbestos-related disease victims. Provides legislative advocacy and patient support resources.
Cancer Care
National nonprofit providing free professional support services to anyone affected by cancer, including mesothelioma. Services include individual counseling, support groups, educational workshops, and limited financial assistance. Social workers with cancer expertise can help navigate treatment and care decisions.
Online Support Communities
Online communities allow mesothelioma patients and families to connect around the clock, regardless of location:
- Mesothelioma.net Community Forum — active patient and caregiver discussion forum
- Cancer Compass — Mesothelioma — long-running online discussion board
- Facebook Groups — several private groups for mesothelioma patients and caregivers; search “mesothelioma support group” on Facebook for currently active groups
- Reddit r/mesothelioma — smaller community for patient and family discussion
Caregiver Resources
Family caregivers face unique challenges. These resources are specifically for caregivers:
- Caregiver Action Network — national nonprofit supporting family caregivers across all diseases, with resources specific to cancer caregiving
- AARP Caregiver Support — practical tools, legal guides, and community for family caregivers
- Family Caregiver Alliance — research-based information, online support groups, and state-by-state resource locator
- Palliative care teams at specialty cancer centers include social workers who can connect caregivers with local support resources
Financial Assistance Programs
| Program | What They Provide |
|---|---|
| Patient Advocate Foundation | Case management services, insurance appeals, co-pay relief funds for specific cancers |
| HealthWell Foundation | Co-pay assistance for cancer patients on qualifying insurance plans |
| NeedyMeds | Database of drug company patient assistance programs for cancer medications including pemetrexed and immunotherapy drugs |
| MARF Patient Services | Navigation support and referrals to financial assistance programs for mesothelioma patients specifically |
| Social Security SSDI | Mesothelioma qualifies for Compassionate Allowances — fast-track approval, typically within weeks |