| Disability Resources |
| Scleroderma (SD) affects everyone differently. Not everyone is disabled by it. Neither does a diagnosis of scleroderma automatically entitle anyone to disability benefits. |
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| Disability Insurance |
| Medicare Toll-Free Hotline (US) is 1-800-MEDICARE (1-800-633-4227). Medicare. |
| Social Security Administration. SSA. |
| Revised Medical Criteria for Evaluating Immune System Disorders; Final rule. Social Security Administration. March 18, 2008. |
| National Organization of Social Security Claimants’ Representatives. Established in 1979, the National Organization of Social Security Claimants' Representatives is an association of over 3,300 attorneys and paralegals who represent Social Security and Supplemental Security Income claimants. NOSSCR Online. |
| Free and Low Cost Medication Programs |
| (U.S.) Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Many will get them free or nearly free. 1-888-4PPA-NOW (1-888-477-2669). PPA. |
| Walmart $4 Prescriptions. Wal-Mart offers over 360 prescription drugs at only $4 per 30-day supply. WalMart. |
| Nexium "Purple Plus Savings Card". Register online for this FREE savings card and get substantial discounts on your Nexium prescription. It is not valid for Massachusetts residents, nor for prescriptions purchased under Medicaid, Medicare, or similar federal, state, or other government-funded prescription benefit programs. Nexium. |
| Beware unapproved use of prescriptions. Most physicians and pharmacists have a secret they don't share with patients. The Food and Drug Administration is in on it, and so are drug companies. One out of five of the prescriptions written in this country are for unapproved uses. Roanoke.com. 03/19/08. (Also see: Medications ) |
| International Medical Relief Agencies |
| Every nonprofit agency in the U.S. has a different scope and mission, as defined and limited by the IRS. The nonprofit International Scleroderma Network is authorized to provide research, support, education and awareness for scleroderma and related illnesses. |
| However, we are not authorized to provide personal financial assistance for any reason, or to assist with amnesty or visas. We cannot make medical appointments, engage in political lobbying, assist with personal or class action lawsuits or disability claims, prescribe medications or treatments, import or export any medications or relief supplies, nor review personal medical records. Such needs are covered by other authorized nonprofit agencies, but each of them is necessarily limited in their scope and ability to help in a particular situation. Please contact these international medical relief agencies directly: |
| Catholic Relief Services. USA Phone: 1-888-277-7575. CRS operates community health programs in 26 countries serving approximately 3.5 million people. CRS focuses on providing healthcare for vulnerable groups in marginalized, unserved or underserved communities. Health programs target communities with poor health statistics, limited access to or low quality health services and low socioeconomic status. Priority is given to those who are at greatest risk, typically women of reproductive age, infants and very young children. CRS. |
| Médecins Sans Frontières (Doctors Without Borders) Switzerland Tel: +41 (22) 849.84.00. Médecins Sans Frontières (MSF) is an international humanitarian aid organisation that provides emergency medical assistance to populations in danger in more than 70 countries. MSF. |
| Flying Doctors. USA Phone: 1-800-585-4568. Email: info@flyingdocs.org. Helps improve the health and well-being of the peoples of Mexico and Central America through the provision of no-cost, high-quality healthcare and health education clinics in rural villages in northern Mexico (northern Sonora and Baja), El Salvador, Guatemala, and Honduras; and among migrant labor populations in the Coachella Valley of the southwestern United States (southern California). Flying Doctors. |
| Flying Doctors of America. USA Phone: 770-386-5221. Our mission is to provide medical assistance and hope to as many of the poor and needy as we are able to reach. We fly medical and dental teams to wherever the need takes us. Flying Doctors of America. |
| For Children: The Global Medical Relief Fund. USA Phone: 1-866-734-4673. Email: info@globmed.org. The GMRF is committed to bring hope and help to children who are missing or have lost use of their limbs, have been severely burned, or are otherwise damaged due to the atrocities of war, natural disaster or illness . The GMRF reaches out both locally and worldwide in search of children in desperate need, with little or no resources to better their condition. We prepare necessary travel documents for both child and guardian, and arrange transportation to the United States, where candidates are fitted with prosthetic limbs and receive medical and/or surgical care. We also provide the patient and his or her guardian room and board for the duration of convalescence. GMRF. |
| Paul O'Gorman Lifeline: UK. UK Phone +44 (0) 1798 831 982. The Lifeline project has been working for 11 years to try to save children in Eastern Europe and Central Asia suffering from life-threatening diseases who cannot be treated in their own countries . We bring these children to hospitals in the UK and Italy and over the last 11 years several hundred children have been treated. Treatment is expensive, often involving bone marrow or stem cell transplant, and typically costs €100,000 per patient. Lifeline UK. |
| (Italiano) Paul O'Gorman Lifeline: Italia. Padova, Italy Cell Phone +39 335 602 8602. Il progetto Lifeline sta lavorando da 11 anni per cercare di salvare i bambini dell’Est Europa e del Centro Asia che soffrono di malattie mortali e che non possono essere curati nei loro paesi. Lifeline Italia. |
| Medical Alert Programs |
 Your Own Medical Information Card. Just fill in the blanks on this do-it-yourself PDF form to keep your medical information handy. The form provides space for your medications, allergies, emergency contact, doctors, and preferred hospitals. Designed for the ISN by Lisa Volz, ISN Artist. |
| "My Medicines" Brochure Can be a Lifesaver. Can carrying around a brochure help save your life? Yes, if it's the "My Medicines" brochure offered by FDA's Office of Women's Health (OWH). It's designed to help consumers track the medications they use. U.S. Food and Drug Administration. |
| Medic Alert. Services include secure in-house database that contains your Personal Health Record (PHR) and allows us to manage member information with privacy. They offer sponsored memberships for those who want this service but cannot afford it. MedicAlert. |
| Life Alert. "Help, I've fallen and I can't get up!". In a home intrusion, or a home fall emergency, or in case of a seizure, heart attack, stroke or other serious illness, a senior usually cannot reach the telephone. She or he may lie on the floor for hours or days, disconnected from any help. This injury can become life threatening. A simple press of a button will instantly activate Life Alert, who will contact neighbors, Paramedics, the Fire Department, Police and/or relatives as needed. LifeAlert. |
| My Personal Health Record. Each one of your healthcare providers (family practitioner, allergist, OB-GYN, etc.) compiles a separate medical record on you. These multiple medical records can lead to an incomplete story about your health. Keeping your own personal health record (PHR) allows you to provide doctors with valuable information that can help improve the quality of care you receive. American Health Information Management Association (AHIMA). |
| Mobility |
 Comfortable Adult Convenience Chair (CACC). The "Man Stroller" is a sporty, unique adult conveyance chair for those who need a push. Lay back and relax with your legs up, even use your notebook computer! Fun but comfortable and practical. About $600-$800 depending on options. Order by phone until new online ordering page is secure, 1-603-464-4648 (US). Blanchard Machine, posted 09-01-06. |
| Wheelchairs, Walkers and Scooters 1-800-Wheelchair.com. |
| Patient Rights |
| Continuation of Health Coverage (COBRA). The Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events. Qualified individuals may be required to pay the entire premium for coverage up to 102 percent of the cost to the plan. |
| Patient Support Programs |
| Patient Advocate Foundation. Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life threatening or debilitating diseases. PAF. |
| Nursing problems of patients with systemic sclerosis. The main aim of individual nursing care is to alleviate ailments, prevent infections, observe life-threatening conditions and to educate the patient as regards self-care and self-observation. (PubMed) Adv Med Sci. 2007; 52 Suppl 1:147-52. |
| Caring Voice Coalition. Comprehensive help for the needs of patients with serious, chronic illnesses. |
| Scholarships for Scleroderma |
| Scleroderma is a form of arthritis, so be sure to search for arthritis scholarships, as that is the broader category. |
| How To Cover High Costs of Higher Education. Also contact your local Arthritis Foundation chapter to find out if there are scholarships available to people with arthritis. Arthritis Foundation. |
| College Board. A full spectrum resource for students, parents and educators. Get your free personalized college planning kit, My College QuickStartTM. The College Board. |
| FastWeb: Find Free Money for School. The largest and most complete source of scholarships available. FastWeb. |
| Search for Scholarships. Search one of the largest FREE scholarship searches on the web! At FindTuition.com, you get fast, free access to one of the world's largest resources for finding college money. FindTuition.com. |
| Juvenile Arthritis Scholarships. Selection criteria includes graduating in Connecticut, Maine, New Hampshire, Rhode Island or Vermont high school senior or college undergraduate; must have arthritis or rheumatic disease; school or Community volunteer service; and academic excellence. Several scholarships for $1,000 each. Arthritis Foundation Northern and Southern New England Chapter. |
| Work or Disability Discussions |
| Coping in the workplace with the serious illness of a fellow employee. If a worker is diagnosed with a serious illness, such as cancer, multiple sclerosis, or chronic fatigue syndrome, they are under no obligation to tell their employer unless it has started to impact their ability to do their job. New Brunswick Business Journal. 04/12/08. |
| Morning stiffness and its influence on early retirement in patients with recent onset rheumatoid arthritis (RA). Severe morning stiffness in the early course of the disease has a high impact on RA patients’ decision to withdraw from working life. G. Westhoff. Rheumatology Access Online. April 15, 2008. (Also See: Rheumatoid Arthritis ) |
| Fibromyalgia: An "Invisible" Disability Deborah A. Barrett, Ph.D. (Also see: Fibromyalgia ) |
| Disability Question. What made you determine you needed disability, you or the doctor? ISN Forums |
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