You may call 0300 124 0441or visit their website for assistance. We will help you find an existing patient advocacy group for your specific rare disease. Programs are listed in alphabetical order by national first then alphabetically by state. NORD is a registered 501(c)(3) charity organization. Rare Disease Day is Feb. 28th. HONcode standard for trustworthy health information: Program provides financial assistance to young adults with rare cancer. Partnering with generous donors, healthcare providers, and pharmacies, we . NORD's primary sources of funding are grants and contracts, contributions, and an annual fund-raising event. Their services are provided in Farsi and English. Phone: 617-249-7300, Danbury, CT office 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. The Partnership for Prescription Assistance (PPA) is one option for people who have no insurance coverage for prescriptions. 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. 866-209-7604 Monday-Friday 9am-5pm ET. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. A live, trained Crisis Counselor receives the text and responds, all from a secure online platform. The bottom line. 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. Suite 410 The Recordati Rare Diseases Patient Support Program helps with: Insurance verification - Get help with confirming that your insurance company will cover your medication, and in understanding your insurance plan benefits. If you are traveling to a treatment center or clinical trial, we may be able to assist. It also offers a chronic disease fund assistance program up to $1,000 to help pay medical bills . 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. 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. We help with diagnostic testing assistance and travel assistance for clinical trials or consultation with disease specialists. Extra Help program for people on Medicare. Many of these diseases affect even fewer people, making it challenging to find medical professionals and support systems. The Orphan Drug Designation Program provides for research grants, tax credits for clinical research, and protocol assistance for the development of drugs for rare diseases and disorders. Over 7,000 rare diseases affect more than 30 million people in the United States. Please note that NORD provides this information for the benefit of the rare disease community. TAF's VISION is to see the day when no person goes without treatment because of an inability to pay. Some are disease-specific, while other programs will help with any qualifying medical expense. and rare diseases with the out-of-pocket costs for their prescribed medications. 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. 55 Kenosia Avenue The process is quick and easy. Phone: 203-263-9938 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. Plus, sign up for FundFinder to get notified when funding becomes available at PAN or other organizations. To learn more, visit https://giftofadoption.org/rareis/ 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. Quincy, MA 02169 Contact your state's Department of Human Services for assistance with applying for financial help. Fax: 203-263-9938, Washington, DC Office For link problems or other technical problems, send an email to For more information and to apply, please contact rdeducate@rarediseases.org or 860.556.2208. Provides information about who qualifies for Social Security disability benefits and links to more information including how to apply online. Organizations that provide assistance to those with rare disease: Patient Services, Inc: Provides financial support and guidance for patients with specific, . Good Days is an organization that works to improve the health and quality of life of patients with chronic disease, cancer, or other life-altering conditions. Changing lives of those with rare disease. 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. New York, NY 10023. Find a disease fund - PAN Foundation Find a Disease Fund Get financial assistance in minutes 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. Lists rare disease helplines for countries around the world that help people living with a rare disease find information and support. 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. For more information and to apply, please contact: [emailprotected] or 203.616.4325. Phone: 202-588-5700. Gift of Adoption is a national 501(c)(3) charity that provides the final funds needed to complete the adoptions of vulnerable children. 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. We provide the training, education, resources and opportunities to make their voices heard. Provides services to family caregivers of adults with physical and cognitive impairments. Changing lives of those with rare disease. Offers support for any crisis via text, 24 hours a day/7 days a week. Provides financial assistance for medical expenses and medical equipment and/or supplies to families with a child with a rare disease. The organizations and resources are listed for information purposes only. Interested rare disease patients and families can reach out to NORD to find out if they meet eligibility requirements. 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. SWAN is focused on supporting those who are undiagnosed. 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. Suite 500 addressing the financial needs of disenfranchised rare disease communities. We have teamed up with the MedicAlert Foundation to provide protection to rare disease patients in emergency situations. You may call +91-9666438880 or visit their website for assistance. Charities that offer chronic illness assistance There are many charities that offer help, including financial assistance for autoimmune diseases, genetic disorders, and other chronic illnesses. Durable Medical Equipment; Medical Supplies/Expenses, Assistive Technology/Adaptive Equipment; Durable Medical Equipment; Medical Expenses. Send your questions to GARD using our contact form. 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. Fax: 203-263-9938, Washington, DC Office Phone: 202-588-5700. Learn about NORDs full breadth of programs. NORD is a registered 501(c)(3) charity organization. Provides information on workplace accommodations and disability employment issues. Learn about the team that leads The Assistance Fund. 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. Please note the status of the fund for each individual disease may change throughout the year. Washington, DC 20005. They provide many resources for people living with rare diseases, their families and other advocates. 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. OF ALL DONATIONS GO DIRECTLY TO PATIENTS. Phone: 203-263-9938 Donations are used to support NORDs wide range of programs and services that serve patients and their caregivers and the organizations that serve them. Provides similar services as GARD only they will know more about the resources and medical specialists available in China. These rare disease organizations promote the needs and priorities of people living with rare diseases and their families and provide various types of support and assistance. Suite 310 You may call 072 476 7552 or visit their website for assistance. Orlando, FL 32839, 655 15th St. NW NORD is a registered 501(c)(3) charity organization. If you are unable to find the information or resources you are looking for, GARD Information Specialists can help. 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.