Looking for Financial Resources?

Living with a rare disease can put a huge financial burden on families due to the high costs of medical tests, specialist visits, prescription medications, health equipment, hospitalizations,  transportation to specialists and not being able to work (both for the patient as well as the caregiver).

While Global Genes does not provide financial assistance to families, our RARE Concierge team has created a list of financial resources for families.

Health Coverage

State and Federal Programs

There are state and federal programs to help people who cannot afford medical care or prescription drugs:

• Benefits.gov is a free tool that helps people find various types of financial assistance by state.

You can find federally-funded or low-cost medical and dental care from:

• Health Resources & Services Administration (HRSA): Get Affordable Health Care.

Health Coverage Toolkits

Global Genes has developed a number of toolkits that may be helpful to you, including:

• Understanding and Navigating Medicare
• Navigating Health Insurance 
• Financial Literacy and Navigation in Rare Disease

Organizations Offering Financial Assistance

• Accessia Health – provides financial assistance to pay for prescriptions, medical treatments, and insurance. Program services include – healthcare education, specialized legal services, and case management.
• HealthWell Foundation –  non-profit organization providing financial assistance to adults and children to cover the cost of prescription drug coinsurance, copayments, deductibles, health insurance premiums, and other selected out-of-pocket health care costs. (serves US residents with medical coverage, treated in US)
• PAN Foundation – helps underinsured people with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.or a particular disease.
  • FundFinder – helps find financial assistance from charitable foundations for a particular disease.
  • Finding Financial Assistance for Rare Diseases in the US – Blog post on PAN Foundation
• Patient Advocate Foundation – provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses, as well as various financial grants.
  • Rare Disease Careline – You can contact PAF directly at 800-532-5274.  
  • Navigating Assistance Programs Finding Help 
  • Education Resource Library
  • PAF also has a National Financial Resource Directory that allows patients to find resources within a given state.
• RARE Care (NORD) – assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
• The Assistance Fund (TAF) – helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.

Medication Assistance

We recommend calling around to various pharmacies in your area to inquire about pricing. Costs can differ greatly from pharmacy to pharmacy. We suggest speaking with your doctor before paying out-of-pocket, as it may interfere with insurance approval in the future. 

• Good Days – national non-profit charitable organization that lifts the burdens of chronic illness through assistance, advocacy, and awareness.
• GoodRX – gathers current prices and discounts to help you find the lowest cost pharmacy for your prescriptions.
• Mark Cuban Cost Plus Drug Company – offers hundreds of common (and often life-saving) medications at the lowest possible prices.
• Medicine Assistance Tool (MAT) – the Pharmaceutical Research and Manufacturers of America (PhRMA) created a tool that allows patients, caregivers, and healthcare providers to search for financial assistance resources offered through various biopharmaceutical programs to help cover the cost of medications: 
• Medicare – Pharmaceutical Assistance – Some pharmaceutical companies offer programs to help pay for prescriptions for people in a Medicare Drug Plan (Part D)
• NeedyMeds – programs that help people with medication and healthcare costs, information about government programs, low-cost medical and dental clinics, and prescription assistance. It also has disease-specific financial aid programs. You can contact them directly at 800-503-6897.
• RxAssist – Patient Assistance Program Center – helps people search for programs set up by drug companies that offer free or discounted drugs to uninsured individuals who cannot afford their medication.
• RxOutreach is a non-profit mail-order pharmacy that provides affordable medication to underserved individuals. A list of medications and prices can be found here. For more information, call 888-796-1234.
• RX Hope – a helping hand to people in need in obtaining critical medications that they would normally have trouble affording.  They act as your advocate in making the patient assistance program journey easier and faster by supplying vital information and help.

Medical Transportation

• Air Care Alliance – Helps patients in need gain access to distant medical care or supportive services by arranging free flights through volunteer pilots.
• Air Charity Network (Angel Flight) – a charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis.
• Assistance with Medical Transportation Costs – help with the costs associated with transportation for individuals with a diagnosis or diagnoses that have no other means to pay, usually by providing direct financial assistance, reimbursement, or vouchers.
• Children’s Flight of Hope – provides flights to specialized medical care for children in need.
• Miracle Flights – Provides free commercial flights to pediatric patients in need of life-changing medical care far from home, as well as service dog transportation.
• Mercy Medical Angels – Removing the barrier to medical care with transportation on the ground and in the air.
• PAN Foundation – Transportation – The transportation fund provides financial support to PAN patients with life-threatening, chronic, and rare diseases to access affordable and reliable transportation to and from activities that improve their overall health outcomes, including healthcare services, social connection and support, and healthy and nutritious food.
• RARE Giving (Everylife Foundation) – supports individual rare disease patients as well as organizations that engage patients, caregivers, and others in the community in advocacy and public policy.

Non-Medical Bills

• Affordable Connectivity Program – provides eligible households with a discount on broadband service and connected devices. Helps with telehealth expenses.
• Annie’s Angels –  helping local families struggling financially through a life-threatening disease, illness, or disability connecting neighbor to neighbor, friend to friend, and business to business in a caring fundraising network.
• Assurance – Phones – Lifeline free phone government program.
• Chive Charities – helps to provide: Therapy equipment & sessions not covered by insurance, Handicap accessible home & car modifications, Mobility items. Purchasing of developmental & learning devices, Other medical needs as recommended by a medical professional. Grants to nonprofit organizations that assist individuals with rare diseases.
• National Energy and Utility Affordability Coalition
• PC’s for People – national nonprofit social enterprise working to get low-cost quality computers and internet into the homes of individuals, families, and nonprofits with low income.
• United Way 2-1-1 – comprehensive source of information about local resources and services in the country.

Individual Fundraising

For rare disease families, fundraising can provide critical support by financing expensive treatments and therapies. Online fundraising, also known as crowdsourcing, is something to consider when faced with financial hardship due to rare disease. Some patients find that friends, family, and community members are willing to contribute financially if they are aware of a difficult situation.

• Help Hope Live – community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses.

Global Genes has also developed fundraising toolkits for patient advocacy organizations. A number of these strategies and tools can be useful in your individual fundraising journey. These resources are available on the Global Advocacy Alliance page.