Research Guides: Rare Diseases Information Toolkit: Legal, Financial, Insurance

Financial Resources

Resources for Finding Transportation Support

Air Care Alliance: Patient and Medical Transport
Find a free flight to medical care.
Air Charity Network
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.
Angel Flight East
Provides free air transportation to qualified patients and their families by arranging flights to distant medical facilities, delivering supplies to disaster areas, and reuniting families during desperate times.
Every Life Foundation Rare Diseases: Rare Giving
Supports organizations engaging patients, caregivers, and others in advocacy and public policy.
Mercy Medical Angels
Removing the barrier to medical care with transportation on the ground and in the air.
Miracle Flights
Provides free commercial flights to children in need of life-saving medical care in their local communities.
PALS SkyHope
Provides free medical flights to people who need to access medical care that may be too far to get to by car.
Wings of Hope
Provides airplane travel for those with medical needs that do not have adequate transportation.

Resources for Finding Medical and Treatment Support

AARP Foundation
Search for support: financial assistance, food pantries, medical care, and other free or reduced cost help.
Accesia Health: Get Financial Help
Addresses unmet needs in healthcare, including paying for important expenses such as diagnostic tests, durable medical equipment, dental services, and more.
The Assistance Fund
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.
The Assistance Fund
Apply for payment assistance for your medical costs related to your condition.
CHIVE Charities
Supports underserved veterans, military families, first responders, and rare disease patients with life-changing grants.
HealthWell Foundation: Disease Funds
Reduces financial barriers to care for underinsured patients with chronic, rare, and life-altering diseases with the help of grant funding.
HealthWell Foundation: When Health Insurance is Not Enough
Here you can apply for assistance with copays, premiums, deductibles and out-of-pocket expenses for essential treatments and medications.
HelpHopeLive: Medical Fundraising for the Expenses Insurance Doesn't Cover
Supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses.
My Good Days
A list of the chronic and life-altering diseases Good Days is currently able to support. (The status of the fund for each individual disease state may change throughout the year, from open to closed or closed to open).
National Cancer Institute: Managing Cancer Costs and Medical Information
This page offers tips on managing cancer costs.
National Organization for Rare Disorders: Patient Assistance Programs
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.
PAN Foundation
This site helps underinsured people with life-threatening, chronic, and rare diseases get the medications and treatments they need with financial assistance.
Patient Advocate Foundation
Provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.

Resources for Finding Genetic Testing Support

Little Zebra Fund
Helps families get access to clinical genetic testing.

Resources for Finding Educational Support

National Organization for Rare Disorders: Rare Disease Educational Support Program
Offers rare disease patients, their families and/or caregivers an opportunity to participate in educational programs on rare disease.

Resources for Getting Caregiver Aid

National Organization for Rare Disorders: Help Getting Caregiver Aid
Here caregivers can apply for assistance so that they can take a break.

Prescription Assistance

Medicine Assistance Tool
A search engine designed to help patients, caregivers, and health care providers learn more about the resources available through the various biopharmaceutical industry programs.
NeedyMeds
NeedyMeds can help pay for prescriptions, find a free clinic, or understand your healthcare options.
RxAssist
RxAssist can help you learn about ways to use pharmaceutical company programs and other resources to help reduce your medication costs.
RxHope
RxHope provides financial assistance to patients who need help affording health care.

Resources for Finding Medical Equipment Assistance Support

Ability Found
Ability Found provides mobility and other adaptive equipment to people in need.
DifferentNeedz
Provides grants to individuals with developmental disabilities, their families and organizations that support them to provide medical equipment and/or services.
National Assistive Technology Act Technical Assistance and Training (AT3) Center
The mission of AT3 is to increase access to and acquisition of assistive technologies by individuals with disabilities across the lifespan.
National Disability Institute
Empowers people with disabilities and their families to build a better financial future.
National Disability Institute: Alternative Financing Programs
A list of local assistive technology resources by state.

Grants

EveryLife Foundation: Rare Giving
Supports organizations that engage patients, caregivers and others in the community in advocacy and public policy.
UnitedHealthcare Children's Foundation
Provides medical grants that enhance the quality of life for children across the U.S.

Resources for Finding Home Modifications Support

HomeMods.org: National Directory of Home Modifications and Repairs Resources
A list of resources for home modification and repairs that can make living easier and tasks more accessible.

Insurance Resources

CMS.gov: Consumer Assistance Program
A map of Consumer Assistance Programs in the United States.
Global Genes: Navigating Health Insurance
A toolkit for patients who are navigating health insurance.
HealthCare.gov
Apply for Medicaid in your state.
Medicaid.gov
Learn how to apply for or renew your medicare coverage.
Medicare.gov
Learn about Medicare and find out if you are eligible.
Patient Advocate Foundation: Tips for Appealing Insurance Denials
Tips for when insurance refuses to cover your health care costs.

Legal Resources

Accessia Health: Legal Aid for Disability and Social Security
Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S) is a free disability legal aid program, offered by Accessia Health, for families facing specific chronic medical conditions.

Understanding Disability Benefits and Disability Rights

Disability Information & Access Line
The Disability Information and Access Line (DIAL) helps people with disabilities get connected to information about local community resources that support independent living. DIAL 888.677.1199
Job Accommodation Network
JAN helps individuals with disabilities explore accommodation ideas with an employer.
Patient Advocate Foundation: Understanding SSI and SSDI
This factsheet explains the differences of Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
Social Security Administration: Disability Benefits | How You Qualify
This page describes what it means to qualify for disability benefits.
Social Security Administration: Disability Evaluation Under Social Security - Listing of Impairments
The listing of impairments that count as disabilities according to the rules of social security.
Social Security Administration: Ticket to Work
The Ticket to Work Program supports career development for people with disabilities ages 18 through 64 who wish to work.