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Since 2009, TAF has helped nearly 180,000 people access critical treatment for life-threatening, chronic, and rare diseases. You can search by topic or by state. Please note that NORD provides this information for the benefit of the rare disease community. If so, there are resources to get help from community support to finding a doctor and treating symptoms. Our call center and dedicated information services team fields more than 140,000 calls and emails each year, helping to direct families to the resources and information they need. Specific sources of revenue include: IRS Letter of Determination of 501(c)3 Status, 1900 Crown Colony Drive Living with a Rare Disease It's truly hard to have a rare cancer and have financial hardship in the time of the pandemic, but assistance like what your foundation is giving to us patients are really life-changing and for me a miracle on its own. We can help you find a Rare Disease Center of Excellence for expert clinical care. The Assistance Fund is an independent charitable patient assistance organization that 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. Fax: 203-263-9938, Washington, DC Office Changing lives of those with rare disease. The process is quick and easy. It is why we are committed to organizations that share our common purpose: to transform and better the lives of those who need it most. Quincy, MA 02169 NeedyMeds also has disease-specific financial aid programs. Join our dynamic team learn about open positions. Many diseases impact the quality of life and financial stability of patients and families. Terms and conditions Provides similar services as GARD only they will know more about the resources and medical specialists available in Australia. We publish education fact sheets and downloads, white papers, articles, and updates to help patients, families, healthcare professionals, and students. The Assistance Fund (TAF) is an independent charitable patient assistance organization that 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 HealthWell Foundation is an independent nonprofit dedicated to reducing financial barriers to care for underinsured Americans with chronic and life-altering medical conditions. Offers free air transportation for those receiving medical care for acute and chronic condition. Use tab to navigate through the menu items. You are now leaving the #RAREis Community website. 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. Since 2004, we have provided nearly 1 million underinsured patients with $4 billion in financial assistance. Suite 310 According to the National Organization for Rare Disorders (NORD), diseases that affect less than 200,000 people nationwide are categorized as rare diseases. Assistive Technology/Adaptive Equipment; Durable Medical Equipment; Home/Vehicle - Repairs/Modifications; Medical Services; Medical Supplies/Expenses; Other; Service Animals; Treatments and Procedures; Veterans Assistance; Financial Assistance. Program provides copay assistance for medications to individuals diagnosed with hemophilia or a rare bleeding disorder. We currently manage more than 80 disease programs, each of which covers all FDA-approved treatment for the disease named in the program. Its truly hard to have a rare cancer and have financial hardship in the time of the pandemic, but assistance like what your foundation is giving to us patients are really life-changing and for me a miracle on its own. The Assistance Fund With the respite program, I was able to select a family friend who I trusted, who was already adequately trained to handle my daughters needs, and I could have her provide respite whenever I needed it. Check your eligibility and find out instantly if you qualify for financial assistance for out-of-pocket medication costs, insurance premiums, and even transportation expenses. These programs provide: Medication Financial assistance with insurance premiums and co-pays Diagnostic testing assistance Launching Registries & Natural History Studies. We have teamed up with the MedicAlert Foundation to provide protection to rare disease patients in emergency situations. 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. Horizon Therapeutics is not responsible for content or availability of third-party sites. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. We also help individuals with rare diseases and their families create their own advocacy groups if none exist. Provides similar services as GARD only they will know more about the resources and medical specialists available in Germany. Some are disease-specific, while other programs will help with any qualifying medical expense. We help 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. it affects only males and starts in the first six months of life. Provides financial assistance with ground and air travel for specialized medical evaluation, diagnosis, or treatment. The reimbursement process was easy, and payment was received promptly. Diagnosis of a rare disease causes both financial and emotional hardship for families. Washington, DC 20005. The program provides eligible individuals with a MedicAlert product and three years of membership with a new membership using the tracking code: NORD. 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 childrens education and development. Please check this page regularly because a disease fund status can change. This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply. Phone: 202-588-5700. Our Respite Program provides financial assistance to enable caregivers a break to attend a conference, event or simply have an afternoon or evening away from caregiving. 2023 The Assistance Fund, Inc. All rights reserved. CONTENTS 1 11 Also look for Camps and Scholarships for Rare Diseases, Contents may not be reproduced in any form except for personal use and may not be used on any other website without permission. 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 air transportation to and from medical facilities in the eastern United States for seriously ill and injured children and an accompanying adult. To learn more about FundFinder, visit: https://fundfinder.panfoundation.org. The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in the rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to support critical, non-medical needs. The Assistance Fund is an independent charitable patient assistance organization that provides support for adults and children with rare and chronic diseases. Phone: 203-263-9938 The Rare Families Financial Assistance Fund (Rare Families FAF) is a financial assistance program designed in collaboration with the Rare Advocacy Movement (RAM)'s "Our Lives Matter" Diversity, Equity, Inclusion (OLM DEI) Initiative. Durable Medical Equipment; Medical Supplies/Expenses, Assistive Technology/Adaptive Equipment; Durable Medical Equipment; Medical Expenses. Assistance includes help with the cost of medications and travel. Your support contributes to a financial life-line for rare disease families facing eviction, hunger, and other life threatening situations because of financial stress exacerbated by issues like the pandemic, institutional oppression, the evolving needs of their children diagnosed with a rare condition, etc. 655 15th St. NW, Suite 502 Please note that NORD provides this information for the benefit of the rare disease community. 55 Kenosia Avenue Washington, DC 20036 our Lived Experiences, as people living with rare conditions, motivate us to develop programs with a real world impact. Approximately 25 million to 30 million people in the United States are estimated to have a rare disease, defined as any disease that affects less than 200,000 Americans. Ana, Patient Explore Patient Assistance Programs Manage Your Care NORD is a registered 501(c)(3) charity organization. See what rare disease events are coming up near you Financial Support Despite the name, the organization provides confidential support for people in all types of distress. Helps patients in need gain access to distant medical care or supportive services by arranging free flights through volunteer pilots. You may call +98 (21) 66572937 or visit their website for assistance. Suite 310 All rights reserved. We grant up to $800 annually for those who qualify. Suite 500 You may call +61 (0) 497 003 104 or visit their website for assistance. Insurance Premiums; Living Expenses/Household Expenses; Medical Expenses; Treatments and Procedures; Travel Expenses/Gas Cards; Wigs/Turbans/Scarves/Hats; Financial Assistance; COVID-19 Assistance. 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. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. 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. Quincy, MA 02169 Qualifying families can receive travel assistance for the child patient and up to two parents or legal guardians. The bottom line. This includes grants that keep biological siblings in the same family, prevent children from unnecessarily entering foster care or aging out of orphanages, or complete the adoptions of children with critical medical conditions. Sign up for the wait list on your disease fund page. webmaster. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. Learn about research opportunities for your patients, including natural history studies and clinical trials. Changing lives of those with rare disease. Certain family members may also qualify. EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 962 rare disease patient organizations from 73countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. Patients, family members, and caregivers may contact GARD by phone or our contact form. Patients must be U.S. citizens or permanent residents. NORDs primary sources of funding are grants and contracts, contributions, and an annual fund-raising event. We provide resources, rare disease information, and ways to get involved. Gift of Adoption is a national 501(c)(3) charity that provides the final funds needed to complete the adoptions of vulnerable children. Your legacy can be one that provides hope and healing to everyone, no matter their ability to pay for their out-of-pocket healthcare costs if you choose to leave a gift to PAN in your will. The following organizations can offer assistance directly or can help find other resources. You may call +64 4 385 1119 or visit their website for assistance. 1779 Massachusetts Avenue Transportation Assistance We provide disease-specific information and resources to help you no matter where you are in your journey. To get financial assistance for graft versus host disease, patients must: . NORDs Rare Caregiver Respite program was an absolute lifeline for our family this past year. Contact The information in this site does not constitute legal advice. The National Organization for Rare Disorders (NORD) provides another option for financial help with prescription costs. Drug, biologic . Provides similar services as GARD only they will know more about the resources and medical specialists available in New Zealand. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. Phone: 202-588-5700. You may call 0300 124 0441or visit their website for assistance. Your browser does not support JavaScript. Provides similar services as GARD only they will know more about the resources and medical specialists available in South Africa. Phone: 617-249-7300, Danbury, CT office For more information and to apply, please contact: [emailprotected] or 203.616.4325. Program provides different types of assistance to individuals with rare medical conditions, also Veterans and First Responders with medically related needs. 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. Phone: 617-249-7300, Danbury, CT office Many of these diseases affect even fewer people, making it challenging to find medical professionals and support systems. TAF's VISION is to see the day when no person goes without treatment because of an inability to pay. We are looking for partners, donors, and sponsors to support our work. 1779 Massachusetts Avenue Lists rare disease centers in different countries around the world that offer similar services to GARD. 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. The Assistance Fund NORD's primary sources of funding are grants and contracts, contributions, and an annual fund-raising event. The organization may help provide families with financial and travel assistance. Suite 310 Even with health insurance, prescription co-pays can often add up. We do not speak for patients. HHS-OIG Declines to Impose Sanctions on Drug Manufacturer for Financial Assistance to Pediatric Patients with Rare Disease. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. MPs seek financial help for patients with rare diseases. Copyright 2023 Patient Access Network Foundation. Caring for a loved one demands significant amounts of time, attention, patience and dedication. Washington, DC 20005. 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. We help with diagnostic testing assistance and travel assistance for clinical trials or consultation with disease specialists. About Us - Good Days is a national non-profit advocacy organization that provides patient assistance and financial resources for life-saving and life-extending treatments to people in need. Together we can make a difference for people living with rare diseases. Arranges free travel on corporate jets for cancer patients, bone marrow donors, bone marrow recipients, stem cell donors, and stem cell recipients.