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Disclaimer: These links are provided as a public service. Providing these links does not imply endorsement or support of any program or organization. The Scleroderma Foundation is not responsible for the content of the pages to which links are provided.
Alternative and Complementary Therapy
Arthritis Foundation
National Center for Alternative and Complementary Medicine
Legal/Social Security Disability
Legal
Disability Advocates of America
National Disability Rights Network (NDRN): Nationwide Network of Congressionally mandated, legally-based disability rights agencies.
Social Security Disability
Allsup: Founded
in 1984 by Jim Allsup, a former Social Security field representative,
Allsup was the first nationwide, private Social Security disability
claims services company.
A Greater Understanding of SSI and SSDI and Subsequent Entitlements
Social Security: The official website of the U.S. Social Security Administration
National Organization of Social Security Claimants' Representatives: An
association of over 4,000 attorneys and other advocates who represent
Social Security and Supplemental Security Income claimants.
Social Security Disability Help
Physician’s Disability Services, Inc.:Various
publications available for purchase. Also see “Questions Often Asked
About SSDI” for answers to 15 commonly asked questions.
Government Agencies
National Institutes of Health, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Social Security Online: the official website of the U.S. Social Security Administration
United States Department of Health and Human Services
United States Congress
United States Government Benefits: Interactive site that allows users to answer questions and find any government benefits for which they may be eligible.
Search United States Clinical Trials
United States Office of Disability Employment Policy: An agency within the U.S. Department of Labor with the goal of eliminating barriers to employment.
United States Family Medical Leave Act (FMLA)
The Facts on Government Grants and Loans: Government website that explains the difference and how to access programs for which you may be eligible.
Housing
Seniorliving.org: A free resource for those looking for all types of senior care options: Hospice, home care, respite care, Alzheimer’s care, assisted living, independent living, nursing homes and hospitals.
Joe’s House: We list various
types of lodging throughout the United States. Details on each lodging
facility are available with information on amenities, rates, and
reservation methods and requirements. Although Joe's House is primarily
focused on cancer we welcome patients of the hospitals listed on our
site. If you are a patient of any hospital found on Joe's House you are
welcome to use the lodging facilities listed!
The National Association of Hospital Hospitality Houses, Inc.:
A nonprofit corporation serving facilities that provide lodging and
other supportive services to patients and their families when
confronted with medical emergencies. Costs average $5 to $15; some are
free. (Site also lists hospitality houses that are not members of
NAHHH.)
Insurance
The National Association of State Comprehensive Health Insurance Plans (NASCHIP): Information
and contacts for state run "high risk" insurance pools. Please note
that so far only 33 states have these pools available for individuals
who cannot access health insurance through private insurers.
Long Term Care Toolkit: Caregiver
magazine has compiled this checklist of things to know before purchasing long term care insurance.
Medicare Rights Center: Advocacy site, but provides helpful information about different aspects of Medicare coverage, including explanations of plan benefits and updates on policy changes.
Insure Kids Now: Check
eligibility for free or reduced cost health insurance for your child.
Your Guide to the Appeals Process
The Managed Care Answer Guide
A Greater Understanding: Interpreting Your Explanation of Benefits.
A Consumer Guide for Getting and Keeping Health Insurance: For each state and the District of Columbia. These Consumer Guides
are updated periodically as changes in federal and state policy warrant.
Medication Assistance
NeedyMeds: A way to save on your prescription medications.
If the patient has been diagnosed with PAH, then www.caringvoice.org may be able to help with financial assistance.
If the patient has been diagnosed with PAH, then www.mygooddays.org may be able to help with financial assistance for medication costs.
If the patient has been diagnosed with Pulmonary Fibrosis, The HealthWell Foundation may be able to help with insurance premiums and medication costs.
If the patient has been diagnosed with Pulmonary Fibrosis, www.patientservicesinc.org may be able to help with copayments for approved medications.
Transplants
Autologous non-myeloablative haemopoietic stem-cell transplantation, patients interested in evaluation contact d-spahovic@northwestern.edu
SCOT Study:The SCOT
study will compare the potential benefits of stem cell transplant and
high-dose monthly cyclophosphamide (Cytoxan) in the treatment of
scleroderma.
Second Wind Lung Transplant Association, Inc.:
This organization provides education, support, and resources related
to lung transplantation, but the following list of financial resources
are not organ specific.
United Network for Organ Sharing: Guide to and information about transplantation. Also information on financial assistance related to kidney failure.
Transplant Living: Organized
into sections detailing various aspects of the transplant process such
as “Before the Transplant,” which has information about selecting a
center and finding funding.
American Organ Transplant Association
ConnTRANS:Connecticut program to assist organ transplant patients and their families with medical and ancillary expenses. (Connecticut only.)
Help Hope Live: Helps patients and families faced with a transplant or catastrophic injury tackle the daunting task of bridging the financial gap between what their health insurance will cover and what they actually need to heal, live and thrive.
Veterans
The LeMay Foundation: The
LeMay Foundation helps widows of all Air Force Retirees, both officers
and enlisted, through financial grants of assistance.
Air Force Enlisted Foundation:
The Air Force Enlisted Village's primary goal is to offer housing and
financial assistance to widows/surviving spouses of retired Air Force
enlisted members. The widow/surviving spouse with the greatest need is
cared for first and none are refused assistance due to financial status.
Air Force Aid Society, Inc.: As the
official charity of the United States Air Force, the primary mission of
the Air Force Aid Society is to provide emergency financial assistance
to Air Force members and their families. Last year emergency assistance
disbursements exceeded $13 million in interest-free loans and grants
to more than 17,000 individuals who needed help with such things as
basic living expenses, emergency travel, and vehicle repair.
Air Force Village Foundation:
Air Force Villages are dedicated to excellent retirement living, with
access to continuing health care, for military officers who served
honorably, and their spouses, with priority to retired Air Force Officer
widows and widowers in need of financial assistance.
