If you need help paying for your medical bills, NORD may be able to help. Phone: 203-263-9938 Some are disease-specific, while other programs will help with any qualifying medical expense. Washington, DC 20036 Obtaining financial assistance with medical care and procedures is one of the first steps. Their services are provided in Farsi and English. Program helps eligible individuals, who are prescribed one of Sanofi Genzymes treatments, pay for their eligible, out-of-pocket, drug-related expenses, including copays, coinsurance, and deductibles. We provide financial assistance to caregivers for much needed respite so they can attend a conference or simply take an evening away. We offer support for caregivers through our Caregiver Respite Program. Read our latest announcements, newsletters, and press releases. Privacy policy Provides help to patients with specific life-altering conditions. We are looking for partners, donors, and sponsors to support our work. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. Fax: 203-263-9938, Washington, DC Office View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. Interested rare disease patients and families can reach out to NORD to find out if they meet eligibility requirements. Inclusion on this list does not reflect an endorsement by GARD or the NIH. Even with health insurance, prescription co-pays can often add up. TAF's MISSION is to provide underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy. To learn more about FundFinder, visit: https://fundfinder.panfoundation.org. Programs are listed in alphabetical order by national first then alphabetically by state. 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. We help with diagnostic testing assistance and travel assistance for clinical trials or consultation with disease specialists. HHS-OIG declined to impose administrative . Suite 500 For link problems or other technical problems, send an email to Quincy, MA 02169 The following organizations can offer assistance directly or can help find other resources. Apply online in just a few minutes to get funding for a full year, with the potential for renewal. If you need help with prescription costs or insurance copays, the National Organization for Rare Disorders may partially or fully cover the cost. Orlando, FL 32839, Washington, DC, Office: NeedyMeds 10 Diagnosis-Based Assistance Programs for Rare Diseases. Washington, DC 20005. 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. 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 disease fund status can change over time, so you may need to check back if funds are not currently available. Lists programs that help people who cannot afford medications and healthcare costs. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation . By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. We provide events and programs to help the more than 30 million people living with rare diseases, as well as their families and caregivers. Terms and conditions Changing lives of those with rare disease. 655 15th St. NW, Suite 502 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. Ana, Patient Explore Patient Assistance Programs Manage Your Care The National Organization for Rare Disorders (NORD) RareCare SM program helps patients get lifesaving or life-sustaining medication they cannot otherwise afford. How to apply, manage a grant, file claims and reimbursements, and details about our grants, Our policy positions, research polling and surveys, policy letters, and Medicare reform resources. Learn about the team that leads The Assistance Fund. Phone: 202-588-5700. Suite 310 Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. The National Organization for Rare Disorders (NORD) is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service. These rare disease centers will know the resources in their own countries better than GARD does. To learn more, visit https://giftofadoption.org/rareis/ Program provides different types of assistance to individuals with rare medical conditions, also Veterans and First Responders with medically related needs. Phone: 617-249-7300, Danbury, CT office 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. Miracle Flights provides financial assistance to low-income children for commercial air travel to obtain special medical care. At Horizon Therapeutics, we know our responsibility goes beyond our patient communities to the communities where we live and work. SWAN is focused on supporting those who are undiagnosed. 2023 The Assistance Fund, Inc. All rights reserved. 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. Insurance Premiums; Living Expenses/Household Expenses; Medical Expenses; Treatments and Procedures; Travel Expenses/Gas Cards; Wigs/Turbans/Scarves/Hats; Financial Assistance; COVID-19 Assistance. All other trademarks are the property of their respective owners. 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. CHHATRAPATI SAMBHAJINAGAR: Twenty-four parliamentarians across party lines have approached Union health and family welfare minister Mansukh . NORD's primary sources of funding are grants and contracts, contributions, and an annual fund-raising event. 4700 Millenia Blvd., Suite 410 Try seeking out nonprofit advocacy groups, clinics, and drug company patient assistance programs.Patient advocates can guide you to affordable health insurance and financial aid for medical and home-care needs. Provides similar services as GARD only they will know more about the resources and medical specialists available in South Africa. 1900 Crown Colony Drive Sign up for the wait list on your disease fund page. 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. The Assistance Fund is an independent 501(c)(3) 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. Gift of Adoption is a national 501(c)(3) charity that provides the final funds needed to complete the adoptions of vulnerable children. The. Their service is available in French and English. Copyright 2023 Leaf Group Ltd. / Leaf Group Media, All Rights Reserved. Stay Informed With NORDs Email Newsletter, Launching Registries & Natural History Studies, Information on Clinical Trials & Research Studies. Plus, sign up for FundFinder to get notified when funding becomes available at PAN or other organizations. The information in this site does not constitute legal advice. Suite 310 Kaiser Health News. 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. Since many rare diseases are genetic or are detected at birth, many options are available specifically for children. To learn more, visit, The #RAREis Adoption Fund supports Gift of Adoptions mission to provide financial assistance to complete the final steps of adoption of at-risk children. New York, NY 10023. Toll-free: 800-368-5779. Columbus Circle Station. We also help individuals with rare diseases and their families create their own advocacy groups if none exist. HONcode standard for trustworthy health information: Program provides financial assistance to young adults with rare cancer. The Assistance Fund See what rare disease events are coming up near you. TAF's VISION is to see the day when no person goes without treatment because of an inability to pay. 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. Many of these diseases affect even fewer people, making it challenging to find medical professionals and support systems. 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. Washington, DC 20036 Provides similar services as GARD only they will know more about the resources and medical specialists available in New Zealand. Provides information about who qualifies for Social Security Supplemental Security Income (SSI) and links to more information including how to apply. Phone: 203-263-9938 4700 Millenia Blvd. 1779 Massachusetts Avenue However, we can't guarantee the accuracy or completeness of the information. You may call +91-9666438880 or visit their website for assistance. 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. Extra Help program for people on Medicare. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. 55 Kenosia Avenue Please note the status of the fund for each individual disease may change throughout the year. Phone: 202-588-5700. Over 7,000 rare diseases affect more than 30 million people in the United States. Changing lives of those with rare disease. The National Organization for Rare Disorders (NORD) provides another option for financial help with prescription costs. Offers free air transportation for those receiving medical care for acute and chronic condition. Treatment for rare diseases often means an ongoing need for prescription medication. Changing lives of those with rare disease. Saturday, February 25, 2023. We help individuals and their families obtain medications they cannot afford, provide financial assistance with insurance premiums and co-pays, and offer resources and advocacy skills if an insurance company denies a claim. To learn more, visit. Fax: 203-263-9938, Washington, DC Office She graduated from the University of Rio Grande with a Bachelor of Science in communications/public relations in 1999. 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. Suite 410 You may call 010-67500717 or visit their website for assistance. Many rare conditions are life-threatening and most do not have treatments. 1779 Massachusetts Avenue Phone: 203-263-9938 NORDs primary sources of funding are grants and contracts, contributions, and an annual fund-raising event. 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. Phone: 202-588-5700. This is truly a gift/blessing! A variety of government assistance programs such as the Bureau for Children with Medical Handicaps and Medicaid are available for those with rare illnesses. We currently manage more than 80 disease programs, each of which covers all FDA-approved treatment for the disease named in the program. For more information and to apply, please contact: [emailprotected] or 203.616.4325. The Partnership for Prescription Assistance (PPA) is one option for people who have no insurance coverage for prescriptions. our Lived Experiences, as people living with rare conditions, motivate us to develop programs with a real world impact. Organizations that provide assistance to those with rare disease: Patient Services, Inc: Provides financial support and guidance for patients with specific, . 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. Federal programs for assistance with rare diseases include the Prevention of Complications of Hemophilia. 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. Suite 502 Suite 310 *Please Note: The Organization does not provide direct patient funding.*. Help us support the millions who struggle to afford medications. NORD is a registered 501(c)(3) charity organization. If you or your loved one requires additional medical supplies, such a ostomy bags or catheters, health insurance companies often place restrictions on how many of these supplies they will pay for in a given time period. Giving you accurate, understandable information is one of our top priorities. Children who have rare diseases that result in serious physical limitations or challenges may also be eligible for Social Security income (SSI) and Medicaid coverage. Donations are used to support NORDs wide range of programs and services that serve patients and their caregivers and the organizations that serve them. Purpose: to help alleviate some of the financial burdens that disenfranchised rare disease families face on a regular basis. By continuing to use this website, you agree to the Terms of Service & Privacy Policy, A Podcast For The Rare Disease Community, Policy Statements & Letters to Policymakers. Nicole Brown began writing professionally for Java Joint Media in 2007. HHS-OIG Declines to Impose Sanctions on Drug Manufacturer for Financial Assistance to Pediatric Patients with Rare Disease. Certain family members may also qualify. Immunodysregulation polyendocrinopathy enteropathy x-linked (IPEX) syndrome is a rare autoimmune disease. You may call 0300 124 0441or visit their website for assistance. Provides information on workplace accommodations and disability employment issues. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. 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. A live, trained Crisis Counselor receives the text and responds, all from a secure online platform. 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. We provide patient assistance programs to help individuals living with rare diseases: Our RareCare program helps patients obtain life-saving or life-sustaining medication they could not otherwise afford. You may call +98 (21) 66572937 or visit their website for assistance. Provides medical air transport services, free of charge, to individuals who need specialized medical care that is not available to them locally. Program provides the opportunity to borrow durable medical equipment and medical supplies free of charge, for individuals with a rare or complex medical need. 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. NORD is a registered 501(c)(3) charity organization. Please note the status of the fund for each individual disease may change throughout the year. PAF also has a National Financial Resource Directory that allows patients to find resources within a given state. Specific sources of revenue include: IRS Letter of Determination of 501(c)3 Status, 1900 Crown Colony Drive Suite 310 We host events where individuals living with rare diseases and their families can learn, connect, and support others such as the Living Rare, Living Stronger Patient & Family Forum and Running for Rare, a charity and awareness event. 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. It also offers a chronic disease fund assistance program up to $1,000 to help pay medical bills . 1900 Crown Colony Drive Provides similar services as GARD only they will know more about the resources and medical specialists available in India. With international scope, Global Genes develops educational resources, programs, and events that unite patients, advocates, and industry experts. We currently manage more than 80 disease programs, each of which . The organization may help provide families with financial and travel assistance. Specific sources of revenue include: administrative fees and grants for patient assistance programs foundation and corporate grants individual and organizational membership dues conferences and events Launching Registries & Natural History Studies. Created by the PAN Foundation, FundFinder is a web-based app designed to help patients with life-threatening, chronic or rare diseases quickly find financial assistance. Fax: 203-263-9938, Washington, DC Office 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 financial assistance for medical expenses and medical equipment and/or supplies to families with a child with a rare disease. If you are unable to access mental health services, this lifeline provides a resource to those who are feeling overwhelmed. Learn about research opportunities for your patients, including natural history studies and clinical trials. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential. You may call +49-30-3300708-0 or visit their website for 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. 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. We will help you find an existing patient advocacy group for your specific rare disease. Provides similar services as GARD only they will know more about the resources and medical specialists available in Germany. If so, there are resources to get help from community support to finding a doctor and treating symptoms. Horizon's three-year commitment will support the adoption of more than 30 children living with rare diseases. Danbury, CT 06810 Quincy, MA 02169 Caring for a loved one demands significant amounts of time, attention, patience and dedication. We have teamed up with the MedicAlert Foundation to provide protection to rare disease patients in emergency situations. You may call +91 8892-555-000 or visit their website for assistance. 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. The process is quick and easy. Centers for Medicare and Medicaid Services. All rights reserved. Please check this page regularly because a disease fund status can change. TheRare 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. Many do not have the financial resources to care for themselves or a loved one after diagnosis; however, assistance is available. For more information and to apply, please contact [emailprotected] or 860.556.2208. 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. 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. This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply. 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. Provides services to family caregivers of adults with physical and cognitive impairments. These programs provide: Medication Financial assistance with insurance premiums and co-pays Diagnostic testing assistance Suite 500 Suite 500 55 Kenosia Avenue 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. Your browser does not support JavaScript. NORD is a registered 501(c)(3) charity organization. Qualifying families can receive travel assistance for the child patient and up to two parents or legal guardians. Please note that NORD provides this information for the benefit of the rare disease community. Washington, DC 20005. Contact 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. The Partnership for Prescription Assistance. By continuing to use this website, you agree to the Terms of Service & Privacy Policy, A Podcast For The Rare Disease Community, Policy Statements & Letters to Policymakers. Orphanet is a consortium of 40 countries, within Europe and across the globe. Since 2004, we have provided nearly 1 million underinsured patients with $4 billion in financial 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. The Assistance Fund The organization may help provide families with financial and travel assistance. Volunteer to lend your expertise. Provides information about who qualifies for Social Security disability benefits and links to more information including how to apply online. 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. For more information on the NORD COVID-19 Critical Relief Program and to . Gift of Adoption prioritizes grants for those adopting the most vulnerable children facing what is likely their last or only chance at adoption. See how many people we've helped in your state. Provides similar services as GARD only they will know more about the resources and medical specialists available in Iran. 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. Brown is a state-tested nursing assistant with two years of experience in the health care field. 2023 Rare Disease Grant Opportunities RARE Mental Health Impact Grant An opportunity for patient advocacy leaders to improve the health and mental well-being of the rare disease community-including children, siblings, caregivers/care partners and those who are grieving. NORD is a registered 501(c)(3) charity organization. You can search by topic or by state. All scholarship recipients will be selected by an EveryLife Foundation-appointed, independent board of reviewers. They offer help with drug copayments, deductibles, and health insurance premiums for patients with specific diseases. We can help you find a Rare Disease Center of Excellence for expert clinical care. Many rare diseases can result in death if they are not properly treated. We provide resources, rare disease information, and ways to get involved. 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. RAREis and the HORIZON logo are trademarks owned by or licensed to Horizon. Get to know the ways PAN is advocating for healthcare access. Offers support for any crisis via text, 24 hours a day/7 days a week. Partnering with generous donors, healthcare providers, and pharmacies, we . You may call 1-888-822-2854 or visit their website for assistance. The Assistance Fund is an independent charitable patient assistance organization that provides support for adults and children with rare and chronic diseases. JAN is a service of the Office of Disability Employment Policy in the U.S. Department of Labor. If additional supplies are needed before your insurance company allows you to reorder, you may have no other choice but to pay for them out of pocket. Assistance includes help with the cost of medications and travel. Provides various services, including education and financial aid, to help patients with a chronic or serious illness cover the cost of FDA-approved medications. Provides financial assistance with ground and air travel for specialized medical evaluation, diagnosis, or treatment. Danbury, CT 06810 Contact your state's Department of Human Services for assistance with applying for financial help. Horizon Therapeutics is not responsible for content or availability of third-party sites. Provides financial assistance for underinsured patients living with chronic and life-altering conditions. Learn More About the Grant Health Equity in RARE Impact Grant If you have a rare disease but don't have insurance, you can still get help with the costs of care. Provides similar services as GARD only they will know more about the resources and medical specialists available in Canada. 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. Phone: 617-249-7300, Danbury, CT office 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. Arranges free travel on corporate jets for cancer patients, bone marrow donors, bone marrow recipients, stem cell donors, and stem cell recipients. Please enable javascript for a better experience. 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. 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. By assisting with their cost-sharing obligations, HealthWell offers a financial lifeline to adults and children who desperately need critical medical treatments but cant afford them. and rare diseases with the out-of-pocket costs for their prescribed medications. Provides similar services as GARD only they will know more about the resources and medical specialists available in Italy. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases.