Are There Resources To Help Cover Medical Expenses?

• National and regional resources are dedicated to improving access to care and decreasing the financial burdens of a rare disease diagnosis. The Patient Advocate Foundation provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses. Filter by age, location, diagnosis, and/or type of assistance needed to find the right resources.

• Government programs, low-cost medical and dentals clinics, and prescription assistance are all resources listed by NeedyMeds that may help to cover medical expenses.

• The National Organization for Rare Disorders (NORD) provides financial assistance for medications, insurance premiums, co-pays, diagnostic testing, and travel for clinical trials or consultations with disease specialists.

• Community-based fundraising may help offset some of the costs associated with a rare disease diagnosis. Help Hope Live supports community-based fundraising efforts for people with unmet medical expenses and related costs due to illnesses.

Are There Resources To Help With Medical Travel?

• A number of programs offer medical transportation services, including some that help with travel expenses. NeedyMeds offers a list of these types of resources that can be searched by diagnosis or location.

• Programs such as Air Care Alliance can help arrange medical transportation, listing available options based on location. Request a flight or information through its website.

• In some cases, free flights may be available for specific individuals. Patient Airlift Services provides free medical and compassion flights for patients and veterans.

Are There Resources That Assist With Housing During Medical Travel?

• The Patients Rising concierge maintains a list of discounted lodging for patients and caregivers.

Where Can You Find Help Accessing Care?

• Health Centers are community-based organizations that deliver comprehensive, culturally aware, high-quality primary health care services to all in need.

• Access care at a health center funded by the Health Resources and Services Administration (HRSA). You can locate a health center near you by typing your location on this HRSA mapping tool.

• Find free or reduced-cost health care for lower-income individuals provided by a Hill-Burton facility.

Where Can You Find Guidance On Health Insurance?

• Find guidance and plan options for health insurance coverage in the United States from HealthCare.gov.

• The U.S. Government offers a variety of health insurance coverage services. Medicaid is a federal and state health insurance program for people with a low income. The Children’s Health Insurance Program (CHIP) offers health coverage to children. Medicaid and CHIP program names are different in each state.

• Consumer Assistance Programs (CAP) offer free assistance to help you navigate health insurance options and troubleshoot issues.

Are There Resources To Help Navigate Educational Programs?

• Parent Centers perform direct services for the families of youth with disabilities. They aim to help parents navigate education and development. Use this tool to learn more and locate your local Parent Center.

• Understanding how to effectively advocate for the unique needs of your child at their school will help facilitate their educational success. This article guides you through the important steps and considerations when advocating for a child with a rare disease.

• The Arc advocates for students with intellectual and developmental disabilities to get the school support they need. This nonprofit also provides resources to support students' full inclusion and participation in the community.

• The CDC offers information on early intervention services that are available to babies and young children with developmental delays and disabilities. Explore who is eligible and where to find programs in each state.

Where Can You Find Guidance For Employment And Disability Benefits?

• The Job Accommodation Network offers free, one-on-one, and confidential guidance from experts to navigate disability accommodations from employers in the U.S.

• There are laws in place to protect your right to work for fair pay with the accommodations you need. Learn more about these rights from the National Disability Rights Network.

• Public assistance programs are available to people who meet certain requirements for disability. The Social Security Administration offers guidance on what to expect during the application process for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

• This guide outlines the steps for building and submitting a strong application for public disability benefits.

What If You Are In Crisis?

• You are not alone. The 988 Lifeline offers free and confidential support for people in distress or in need of emotional support. The service is available 24 hours a day, 7 days a week and is provided by trained Crisis Counselors. Call 9-8-8.

• The Crisis Text Line is available for any crisis. A live, trained Crisis Counselor receives the text and responds from a secure online platform. Text 741741.

How Can You Support Your Mental Health?

• An important first step to supporting your mental health is finding a mental health professional to support your needs. Here, find a step-by-step guide to find a professional you feel comfortable talking to. Call 800-950-6264 or text "HelpLine" to 62640.

• Use this tool to find a psychologist, psychiatrist, therapist, or treatment center near you that accepts your healthcare insurance.

• Finding a community facing similar challenges can help support your mental health. Learn more about how experiencing chronic illness may impact your mental health. Here, find guidance and resources to locate care in your area.