Federal programs for assistance with rare diseases include the Prevention of Complications of Hemophilia. Provides similar services as GARD only they will know more about the resources and medical specialists available in Germany. Provides free domestic air travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need. Obtaining financial assistance with medical care and procedures is one of the first steps. NORD also has a networking program that can help with applying for aid. We grant up to $800 annually for those who qualify. For more information and to apply, please contact: [emailprotected] or 203.616.4325. 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. Learn more about our grants and how to apply. 1779 Massachusetts Avenue NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. MedicAlert will donate 20% of the membership fees to NORD to further our mission of providing care and resources for those living with rare disorders. Suite 500 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. Washington, DC 20036 NeedyMeds
Plus, sign up for FundFinder to get notified when funding becomes available at PAN or other organizations. Please note the status of the fund for each individual disease may change throughout the year. There are more than 7,000 rare diseases and more than 90% don't have cures, according to . Many of these diseases affect even fewer people, making it challenging to find medical professionals and support systems. Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential. Immunodysregulation polyendocrinopathy enteropathy x-linked (IPEX) syndrome is a rare autoimmune disease. Durable Medical Equipment; Medical Supplies/Expenses, Assistive Technology/Adaptive Equipment; Durable Medical Equipment; Medical Expenses. Centers of Excellence give those living with a rare disease the best standards Patients are able to access multiple designated centers nationwide, with each center offering access to the best possible coordinated multi-specialty clinical care and diagnostic opportunities for rare diseases. Programs are listed in alphabetical order by national first then alphabetically by state. Purpose: to help alleviate some of the financial burdens that disenfranchised rare disease families face on a regular basis. Phone: 203-263-9938 Suite 502 They provide many resources for people living with rare diseases, their families and other advocates. Many rare conditions are life-threatening and most do not have treatments. We help people who are undiagnosed and searching for a medical diagnosis. The organization awards grants of up to $10,000 to provide families regardless of race, religion, age, marital status, or sexual orientation the financial support needed to bring their children home. Suite 410 The symptoms of IPEX syndrome include severe diarrhea, diabetes, skin conditions (such as eczema, erythroderma, or psoriasis), and thyroid disease (thyroiditis). Compassion flights are considered on a case-by-case basis. Provides financial assistance to caregivers of a child or adult diagnosed with a rare disorder. With our network of members, advocates, and partners, we make critical connections and work to make an impact for every person with a rare disease. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. Mission To provide underinsured people living with lifethreatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy. Toll-free: 800-368-5779. Global Genes is a leading rare disease patient advocacy organization whose mission is to connect, empower, and inspire the rare disease community. The National Organization for Rare Disorders (NORD) RareCare SM program helps patients get lifesaving or life-sustaining medication they cannot otherwise afford. If you need help paying for your medical bills, NORD may be able to help. Phone: 203-263-9938 The Rare Disease Educational Support Program reimburses registration costs for rare disease-specific educational offerings such as workshops, nutrition classes, and conferences, as well as limited financial assistance for travel and lodging costs. Services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. webmaster. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. Phone: 617-249-7300, Danbury, CT office The HealthWell Foundation is an independent nonprofit dedicated to reducing financial barriers to care for underinsured Americans with chronic and life-altering medical conditions. She graduated from the University of Rio Grande with a Bachelor of Science in communications/public relations in 1999. OF ALL DONATIONS GO DIRECTLY TO PATIENTS. 1,2 About 7000 rare. 866-209-7604 Monday-Friday 9am-5pm ET. Quincy, MA 02169 New York, NY 10023. 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. 1779 Massachusetts Avenue You can text HOME to 741741 from anywhere in the United States, anytime. NORDs Rare Caregiver Respite program was an absolute lifeline for our family this past year. Transportation Assistance By activating the patient advocate, we can change public policy and save lives. Inclusion on this list does not reflect an endorsement by GARD or the NIH. To learn more about FundFinder, visit: https://fundfinder.panfoundation.org. Copyright 2021-2023, Rare Love Ventures. The website from the Centers for Medicare and Medicaid Services may provide information on qualifying for federal or state assistance for medical treatment. Horizons three-year commitment will support the adoption of more than 30 children living with rare diseases. Columbus Circle Station. Program provides copay assistance for medications to individuals diagnosed with hemophilia or a rare bleeding disorder. Stay Informed With NORDs Email Newsletter. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder. Please note that NORD provides this information for the benefit of the rare disease community. Patients must be U.S. citizens or permanent residents. 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. 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. Provides similar services as GARD only they will know more about the resources and medical specialists available in India. Provides information about who qualifies for Social Security Supplemental Security Income (SSI) and links to more information including how to apply. You may call +91-9666438880 or visit their website for assistance. Options: You have the choice of supporting Duchenne Muscular Dystrophy (DMD) Families (in honor of Tim Gillen), single parent rare disease families, or any disenfranchised rare disease family. Stay Informed With NORDs Email Newsletter, Launching Registries & Natural History Studies, administrative fees and grants for patient assistance programs, individual and organizational membership dues, philanthropic contributions from individuals, organizations, and companies. addressing the financial needs of disenfranchised rare disease communities. The bottom line. The Assistance Fund NORD is available for individuals with rare disorders who have no prescription coverage, as well as individuals with rare disorders who do not have enough insurance coverage for prescription drugs. 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. If you are unable to access mental health services, this lifeline provides a resource to those who are feeling overwhelmed. 55 Kenosia Avenue Send your questions to GARD using our contact form. We currently manage more than 80 disease programs, each of which . To get financial assistance for graft versus host disease, patients must: . The #RAREis Adoption Fund supports Gift of Adoption's mission to provide financial assistance to complete the final steps of adoption of at-risk children. Organizations that provide assistance to those with rare disease: Patient Services, Inc: Provides financial support and guidance for patients with specific, . Help filling out Prescription Assistance Program Applications, Assistance with Medical Transportation Costs, Connect with Retreats, Camps & Recreational Programs, Patient Assistance Program Update Service (PAPUS), Diagnosis Assistance Program Update Service (DAPUS), Patient Assistance Program Administration, Chronic, Serious or Life Threatening Illnesses, Allyson Whitney Foundation - Life Interrupted Grant, Help Hope Live (Medical Fundraising Assistance), National Organization for Rare Disorders (NORD) - Rare Caregiver Respite Program, Novo Nordisk Hemophilia & Rare Bleeding (RBD) - Co-Pay Assistance Proram, Riddick's Ride Foundation's Lending Garage, Angel's Hands Foundation - Medical Assistance. Their services are provided in Farsi and English. All rights reserved. Drug, biologic . Danbury, CT 06810 Phone: 202-588-5700. Provides services to family caregivers of adults with physical and cognitive impairments. There are, however, prescription assistance programs available that can help with prescription costs. Gift of Adoption is a national 501(c)(3) charity that provides the final funds needed to complete the adoptions of vulnerable children. According to the National Organization for Rare Disorders (NORD), diseases that affect less than 200,000 people nationwide are categorized as rare diseases. Whether you need help getting a diagnosis, finding resources to assist in finding a specialist, finding a clinical trial, paying medical bills, or affording drugs, NORD is here. Provides financial assistance for medical expenses and medical equipment and/or supplies to families with a child with a rare disease. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. CONTENTS 1 11 Our Resource Library contains resources to assist with meeting your needs and answering questions, wherever you are in your journey and no matter where you live. If you need help with prescription costs or insurance copays, the National Organization for Rare Disorders may partially or fully cover the cost. Programs are listed in alphabetical order by national first then alphabetically by state. Many diseases impact the quality of life and financial stability of patients and families.
Our Odyssey connects young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life. Arranges free travel on corporate jets for cancer patients, bone marrow donors, bone marrow recipients, stem cell donors, and stem cell recipients. See what rare disease events are coming up near you Financial Support RAREis and the HORIZON logo are trademarks owned by or licensed to Horizon. Orlando, FL 32839, 655 15th St. NW Washington, DC 20036 These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation . Certain family members may also qualify. Learn about TAF's impact and read our financial reports. Medical Expenses; Medical Supplies/Expenses, Supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. You may call +91 8892-555-000 or visit their website for assistance. They fly individuals to hospitals and treatment centers in 26 states within a 600 mile radius of their St. Louis, MO headquarters. Caring for a loved one demands significant amounts of time, attention, patience and dedication. Provides similar services as GARD only they will know more about the resources and medical specialists available in South Africa. A variety of government assistance programs such as the Bureau for Children with Medical Handicaps and Medicaid are available for those with rare illnesses.