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EDS Today is committed to helping connect people with EDS to the resources and support they need. This page provides a list of potential resources people with EDS may apply for. Special Thanks to volunteer Lana Christensen for compiling this list!
PATIENT ADVOCACY AND PAIN INFORMATION SOURCESPatient Advocate Foundation - Patient Advocate Foundation seeks to empower patients to take control of their health care. Case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs. Patients are Powerful - This Patients Are Powerful website is designed to walk you through the varied steps to patient empowerment. Most popular are our online printable sample letters to help you challenge your HMO for better care. You can "Request a Copy of YOUR Medical Records", "Request to See a Specialist", "Get a Second Opinion", "Choose Your Hospital", and "Get the Right Prescription Medication". Additionally, we can help with our HMO "Not Medically Necessary" or "Not a Covered Benefit" challenge sample letters. Finally, Patients Are Powerful provides Free Legal Advice in all areas of medical malpractice and a special "Injured at Work" link among our many services. International Alliance of Patients’ Organizations Different medical/pain websites that offer information and help Links to other websites regarding pain INFORMATION ABOUT HIPAAHIPAA stands for Health Insurance Portability and Accountability Act. It sets standards for the privacy of medical records and the ability to carry your health insurance from one insurer to the next. Answers to frequently asked questions about HIPAA from the US health and human services. The Health Privacy Project - Find out the most recent privacy information, how to file a claim, and about state and privacy laws federal laws. Information about HIPAA for researchers - This site has many links about consent forms. Center For Disease Prevention and Control information on HIPAA Information about how HIPAA protects health insurance coverage HIPAA link for Medicare and Medicaid services Some helpful conference proceedings View videos about HIPAA including HIPAA basics and how to file a claim More info: (866) 282-0659 HIPAA Hotline. Send email to: askHIPAA@cms.hhs.gov ASSISTANCE WITH INSURANCECircle Solutions - For low-cost primary health care, a local community health center may be able to help. Visit www.circlesolutions.com/pc to find a health center near you. Health Insurance Info Net - Questions about getting and keeping health insurance: The Institute for Health Care Research and Policy at Georgetown University offers state-by-state consumer guides that summarize medical rights and protections. Visit www.healthinsuranceinfo.net to learn more about the protections in your state. Families USA - Assistance with getting needed medical services paid by a health plan providing coverage: Families USA offers links to ombudsman programs across the country that counsel people with both private and public health coverage who have experienced difficulty getting the care they believe they need. Visit www.familiesusa.org/hap/index_links.htm to find counsel in your area. Ways to lower prescription drug costs for consumers on fixed income: To find information about programs offering free prescription medicines to the disabled and qualified low-income individuals, visit www.disabilityresources.org/RX.html. You can learn about patient assistance programs and other programs designed to help those who can't afford their medicines at www.needymeds.com. Health care providers can find out about pharmaceutical companies' patient assistance programs that provide prescription drugs free or at a minimal charge at www.rxassist.org Resources from Pediatric Oncology Resource Center (not all are for cancer only) MISCELLANEOUSOrganizations/Services that provide a wide range of services or categories not covered elsewhere ... http://www.prayer-warriors.org/general_help.htm
The Christopher and Dana Reeve Paralysis Resource Center - Hospital Christian Fellowship - A wide variety of links to Christian Healing Ministries and other organizations related to Hospital Christian Fellowship and health services CHILDREN'S CHARITIES OF AMERICA MEMBER ORGANIZATIONS I Hate My Life - You can find free and low cost nationwide health care by clicking here. UK Links to helpful organizations Winged Fellowship Trust - Winged Fellowship Trust is a national charity providing holidays for disabled and visually impaired people and breaks for carers. OTHER SITES OF INTERESTDirectory of Digestive Diseases Organizations for Patients Resource Directory Other Health Conditions: Organizations A "gateway" website for health The Reflex Sympathetic Dystrophy Syndrome Association website GETTING THE MOST FROM A SERVICE: WHAT TO ASKNo matter what type of help you are looking for, the only way to find resources to fit your needs is to ask the right questions. When you are calling an organization for information, it is important to think about what questions you are going to ask before you call. Many people find it helpful to write out their questions in advance, and to take notes during the call. Another good tip is to ask the name of the person with whom you are speaking in case you have followup questions. Below are some of the questions you may want to consider if you are calling or visiting a new agency and want to learn about how they can help:
The most important thing to remember is that
you will rarely receive help unless you ask for it. In fact, asking can be
the hardest part of getting help. Don’t be afraid or ashamed to ask for
assistance.
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