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GARD Information Specialists can help find information about:
- Rare diseases
- Finding specialists
- Patient organizations
- Organizations that may provide financial, disability, or travel support
- Clinical studies
- International rare disease organizations
- Support for caregivers
- Resources for people who suspect they have an undiagnosed rare disease
We also encourage you to look at our Resource section below. These resources address common needs of rare disease patients and families, including contact information for rare disease centers outside of the United States.
Important: GARD provides information about genetic and rare diseases for your general knowledge and is not a substitute for a doctor's advice.
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Resources
Many diseases impact the quality of life and financial stability of patients and families. The following organizations can offer assistance directly or can help find other resources. The organizations and resources are listed for information purposes only. Inclusion on this list does not reflect an endorsement by GARD or the NIH.
Partners with other caregiving associations and groups to provide additional resources to help family caregivers address and cope with the challenges of caring for a loved one.
Connects to a network of family organizations across the United States that provide support to families and friends of children and youth with special health care needs.
Provides information and resources and works with families of infants, toddlers, children, and youth with disabilities, birth to 26, helping parents participate effectively in their children’s education and development.
Provides services to family caregivers of adults with physical and cognitive impairments. Services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers.
Partners with other caregiving associations and groups to provide additional resources to help family caregivers address and cope with the challenges of caring for a loved one.
Connects to a network of family organizations across the United States that provide support to families and friends of children and youth with special health care needs.
Provides information and resources and works with families of infants, toddlers, children, and youth with disabilities, birth to 26, helping parents participate effectively in their children’s education and development.
Provides services to family caregivers of adults with physical and cognitive impairments. Services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers.
Provides information about who qualifies for Social Security disability benefits and links to more information including how to apply online. In general, to qualify for Social Security disability benefits, a person must have worked in jobs covered by Social Security and have a medical condition that meets Social Security's definition of disability. Certain family members may also qualify.
Provides information about who qualifies for Social Security Supplemental Security Income (SSI) and links to more information including how to apply. In general, the SSI program provides monthly payments to adults and children with a disability or blindness who have income and resources below specific financial limits.
Provides information on workplace accommodations and disability employment issues. JAN is a service of the Office of Disability Employment Policy in the U.S. Department of Labor.
Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
Provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses. Services include help with the following: access to care; co-pay assistance; social security disability applications; and insurance appeals. PAF also has a National Financial Resource Directory that allows patients to find resources within a given state.
Lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs.
Provides various services, including education and financial aid, to help patients with a chronic or serious illness cover the cost of FDA-approved medications. Patients must be U.S. citizens or permanent residents.
Provides help to patients with specific life-altering conditions. Assistance includes help with the cost of medications and travel. Please note the status of the fund for each individual disease may change throughout the year.
Provides financial assistance for underinsured patients living with chronic and life-altering conditions. They offer help with drug copayments, deductibles, and health insurance premiums for patients with specific diseases. The disease fund status can change over time, so you may need to check back if funds are not currently available.
Provides information to help patients and families understand and manage the costs that may be associated with cancer treatment and care, including learning where to find organizations and resources that offer financial assistance.
Provides financial assistance for patients with specific rare diseases including help with costs of medications, insurance premiums, co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists. In addition, NORD provides links to other financial assistance resources.
Offers nearly 70 disease-specific assistance programs that help patients pay for their out-of-pocket costs, including deductibles, co-pays and coinsurance, health insurance premiums, and transportation expenses to get to treatment. Please note the status of the fund for each individual disease may change throughout the year.
Helps patients in need gain access to distant medical care or supportive services by arranging free flights through volunteer pilots.
Provides financial assistance with ground and air travel for specialized medical evaluation, diagnosis, or treatment.
Provides free domestic air travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need.
Offers free air transportation for those receiving medical care for acute and chronic condition. Compassion flights are considered on a case-by-case basis.
Provides medical air transport services, free of charge, to individuals who need specialized medical care that is not available to them locally. They fly individuals to hospitals and treatment centers in 26 states within a 600 mile radius of their St. Louis, MO headquarters.
Provides air transportation to and from medical facilities in the eastern United States for seriously ill and injured children and an accompanying adult.
Arranges free travel on corporate jets for cancer patients, bone marrow donors, bone marrow recipients, stem cell donors, and stem cell recipients.
Lists rare disease centers in different countries around the world that offer similar services to GARD. These rare disease centers will know the resources in their own countries better than GARD does. Orphanet is a consortium of 40 countries, within Europe and across the globe. Its mission is to gather and improve knowledge on rare diseases so as to improve the diagnosis, care, and treatment of patients with rare diseases.
Lists rare disease helplines for countries around the world that help people living with a rare disease find information and support. EURORDIS is a patient-driven alliance of organizations representing more than 900 rare disease patient organizations in more than 70 countries throughout Europe.
Provides similar services as GARD only they will know more about the resources and medical specialists available in Australia. You may call +61 (0) 497 003 104 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in Canada. Their service is available in French and English. You may call 1-888-822-2854 or visit their website for assistance.
Provides similar services as GARD only this alliance of three organization will know more about the resources and medical specialists available in the United Kingdom. SWAN is focused on supporting those who are undiagnosed. You may call 0300 124 0441or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in India. You may call +91-9666438880 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in India. You may call +91 8892-555-000 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in New Zealand. You may call +64 4 385 1119 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in South Africa. You may call 072 476 7552 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in Italy. You may call 06 4404773 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in Germany. You may call +49-30-3300708-0 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in Iran. Their services are provided in Farsi and English. You may call +98 (21) 66572937 or visit their website for assistance.
Provides similar services as GARD only they will know more about the resources and medical specialists available in China. You may call 010-67500717 or visit their website for assistance.
Serves many people with rare and chronic diseases and understands that these diagnoses can be very isolating and present a heavy emotional (and sometimes financial) burden. If you are unable to access mental health services, this lifeline provides a resource to those who are feeling overwhelmed. Despite the name, the organization provides confidential support for people in all types of distress.
Provides help with suicide intervention, prevention, awareness, and education and hope through online crisis chat, educational on-campus and virtual college events, and awareness campaigns.
Offers support for any crisis via text, 24 hours a day/7 days a week. You can text HOME to 741741 from anywhere in the United States, anytime. A live, trained Crisis Counselor receives the text and responds, all from a secure online platform.