Lupus Alliance of America

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Resources and Links

There are many different aspects to lupus and this section seeks to provide links to websites that cover a variety of topics. These sites will be of interest to those who are diagnosed with lupus, caregivers, family members, friends and healthcare professionals.

Disclaimer: These links are provided as a public service. Providing these links does not imply endorsement or support of any program or organization. The Lupus Alliance of America is not responsible for the content of the pages to which links are provided.

Caregivers and Families

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Friends Health Connection: http://www.48friend.org/index.php

National Alliance for Care Giving: http://www.caregiving.org

National Caregivers Library: http://www.caregiverslibrary.org/

National Family Caregivers Association: http://www.thefamilycaregiver.org

Drug Assistance Programs

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Co-Pays.org: http://www.copays.org; A co-pay relief program to assist insured Americans who medically and financially qualify.

Free Medicine Program: http://www.freemedicineprogram.com

Partnership for Prescription Assistance: http://www.pparx.org; Brings together Americas pharmaceutical companies, doctors and other health care providers and community groups to help those who lack prescription coverage get the medicines they need through the pubic or private program that is right for them.

RXAssist: http://www.rxassist.org; Offers a comprehensive database of assistance programs.

RXHope: http://www.rxhope.com; The only assistance program Internet initiative financially supported by PhRMA and participating pharmaceutical companies.

Together RX: http://www.togetherrxaccess.com; Has a free prescription savings card for eligible residents of the US and Puerto Rico who have no prescription drug coverage.

Employment and Disability

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Americans with Disabilities Act: http://www.usdoj.gov/crt/ada/adahom1.htm; The Americans with Disabilities Act gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications. Questions and Answers about the ADA - http://www.usdoj.gov/crt/ada/q%26aeng02.htm

Council of Disability Rights: http://www.disabilityrights.org/faq1.htm

Disability Rights Education and Defense Fund: http://www.dredf.org/; Works to advance the civil and human rights of people with disabilities through legal advocacy, training, and education.

DisabilityInfo.gov: http://www.disabilityInfo.gov; This federal government website covers a variety of topics related to employment of people with disabilities.

Disabled Online: http://www.disabledonline.com; Offers news stories, message boards, classifieds, disabled topics and chat rooms.

FindLaw.com: http://employment.findlaw.com/employment/employment-employee-discrimination-harassment/employment-employee-disability-discrimination-top/; Provides information about legal protections, rights and obligations for people with disabilities.

Job Accommodation Network: http://www.jan.wvu.edu/; The JAN is a free consulting service designed to increase the employability of people with disabilities.

Patient Advocate Foundation: http://www.patientadvocate.org/index.php; 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.

Government Agencies

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Catalog of Federal Domestic Assistance: https://www.cfda.gov/; Provides access to a database of all Federal programs available to State and Local governments; federally-recognized Indian tribal governments; and private profit and nonprofit organizations and institutions; specialized groups; and individuals.

Govbenefits.gov: http://www.govbenefits.gov; Portals to many Federal, State and local government websites that offer many services and programs for people with chronic conditions.

Health and Human Services: http://www.hhs.gov

Healthcare.Gov: http://www.healthcare.gov; A new comprehensive government website that helps you learn the new laws, find insurance, answers to questions and more.

National Center for Alternative and Complimentary Medicine: http://www.nccam.nih.gov

National Institute of Arthritis and Musculolskeletal and Skin Disease (NIAMS): http://www.niams.nih.gov

National Women’s Health Information Center: http://www.4woman.gov

Stem Cell Information from the NIH: http://stemcells.nih.gov/

Health Insurance and Dental Plans

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Health Insurance Portability & Accountability Act (HIPAA): http://www.dol.gov/ebsa/newsroom/fshipaa.html; Protects and improves the portability and continuity of health insurance coverage and requires that most health plans provide coverage for pre-existing medical conditions after 12 months.

High-Risk Health Insurance Pool: http://www.nahu.org/consumer/healthcare/index.cfm; High-risk pools are private, self-funded health insurance plans organized by state to serve high-risk individuals who meet enrollment criteria and do not have access to group insurance. Thirty-three states have high-risk pools.

Medicaid: http://www.cms.hhs.gov/MedicaidEligibility/01_Overview.asp; Medicaid is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid does not pay money to you; instead, it sends payments directly to your health care providers. Medicaid is a state administered program and each state sets its own guidelines regarding eligibility and services. To help determine if you are eligible for a variety of governmental programs, please visit GovBenefits.gov and BenefitsCheckUp.org websites.

Medicare: http://www.medicare.gov; www.medicare.gov is a federal insurance program that pays for medical care for people who qualify. People who have been determined to be disabled and have been receiving disability benefits for at least 24 months qualify for Medicare. People with lupus who need long term dialysis treatment for chronic kidney disease or require a kidney transplant will qualify for Medicare immediately after they are determined to be disabled. In general, Medicare pays 80 percent of reasonable charges. Medicare Part A (Hospital Insurance) helps cover inpatient care in hospitals, including skilled nursing facilities (not custodial or long-term care). Medicare Part B (Medical Insurance) helps cover doctors' services and outpatient care. Medicare Part C combines hospital and doctor coverage and is provided by private insurers. Medicare Part D provides prescription drug insurance. Private companies also provide the coverage. Beneficiaries choose the drug plan and pay a monthly premium. If you are receiving Social Security Disability, you must wait 24 months from the time you are declared disabled before you can apply for Medicare, unless you have end stage renal disease which makes you eligible immediately.

NY State Insurance Regulation Appeals: http://www.ins.state.ny.us/extapp/extappqa.htm; This site gives you the forms and instructions on how to appeal through the state if your Insurance company will not cover you for a procedure or for medications you need (for instance off label medication like CellCept in the treatment of Lupus)

Patient Advocate Foundation: http://www.patientadvocate.org/; 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.

Health Related Organizations

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American Autoimmune Related Diseases Association: http://www.aarda.org

American Behcet`s Foundation: http://www.behcets.com

American Dietetic Association: http://www.eatright.org

American Pain Foundation: http://www.painfoundation.org

American Sleep Apnea Association: http://www.sleepapnea.org

Anti-Phospholipid Antibody Foundation: http://www.apsfa.org

Arthritis Foundation: http://www.arthritis.org/

Fibromyalgia Network: http://www.fmnetnews.com/

National Association of Hospital Hospitality Houses, Inc: http://www.nahhh.org

National Kidney Foundation: http://www.kidney.org

National Sleep Foundation: http://www.sleepfoundation.org/

Raynaud’s Foundation: http://www.raynauds.org

Scleroderma Foundation: http://www.scleroderma.org

Sjogren’s Syndrome Foundation: http://www.sjogrens.org

Vasculitis Foundation: http://www.vasculitisfoundation.org/

Internet Savvy

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Health & Medical Rumors on the Internet: http://urbanlegends.about.com/library/blxhealth2.htm

How to evaluate Medical Information on the Internet: http://new.cmanet.org/publicdoc.cfm/60/0/GENER/99

How to spot an email hoax: http://urbanlegends.about.com/cs/nethoaxes/ht/emailhoax.htm

How to spot Health Fraud: http://www.fda.gov/Fdac/features/1999/699_fraud.html

Internet Hoaxes, E-mail Rumors and Urban Legends: http://urbanlegends.about.com/od/internet/a/current_netlore.htm

MedlinePlus – Health Fraud: http://www.nlm.nih.gov/medlineplus/healthfraud.html

Kids Links

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504 School Forms: http://www.kidlupus.org/pdf/SAP.pdf

Band-Aids and Blackboards: http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/

Believe In Tomorrow: http://www.believeintomorrow.org

Brave Kids: http://www.bravekids.org

Chemo Angels: http://www.chemoangels.com

Children’s Wish Foundation: http://www.childrenswish.com

Friends of Karen: http://www.friendsofkaren.org

Give Kids the World: http://www.gktw.org

Grant Angel Wishes: http://www.grantangelwishesandtravel.org/; Grant Angel Angel Wishes and Travel Foundation was created specifically for the purpose: •Granting wishes for children who have life-threatening conditions •Granting wishes for other children and adults who are disabled or have other specific major health needs •To support other foundations and non-profit organizations •And to grant scholarships to young fine arts students and athletes through a program that teaches to pay it forward and bless others.

Kids Wish Network: http://www.kidswishnetwork.com

Locks of Love: http://www.locksoflove.org/

Make a Child Smile.org: http://www.makeachildsmile.org

Make A Wish: http://www.makeawish.org

Songs of Love: http://www.songsoflove.org

Special Wish Foundation: http://www.spwish.org

Starbright World: http://www.starbright.org

Sunshine Foundation: http://www.sunshinefoundation.com

The Marty Lyons Foundation: http://www.martylyonsfoundation.org

Pharmaceutical Companies

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Abbott Patient Assistance Program: http://www.abbott.com/global/url/content/en_US/40.40.10:10/general_content/General_Content_00066.htm

AstraZeneca: http://www.bmspaf.org/

Bristol Meyers Sqibb: http://www.bmspaf.org/

Eli Lily Company: http://www.lilly.com/responsibility/servingpatients/programs/

GlaxoSmithKline: http://www.merck.com/responsibility/pap-information.html

Jannsen: http://www.janssen.com/html/cjan/company_pap_janssen.jsp

Merck & Company: http://www.merck.com/responsibility/pap-information.html

Novartis Pharmaceuticals Corporation: http://www.patientassistancenow.com/index.jsp?usertrack.filter_applied=true&NovaId=2935376844068667911

Ortho-McNeil: http://www.ortho-mcneil.com/ortho-mcneil/

Pfizer: http://www.pfizer.com/pfizer/subsites/philanthropy/access/index.jsp

Roche: http://www.rocheusa.com/programs/patientassist.asp

Schering-Plough: http://www.merck.com/responsibility/pap-information.html

Solvay Pharmaceuticals: http://abbottgrowth-us.com/patients/patientassistanceprogram/0,,7438-2-0,00.htm

Wyeth Pharmaceuticals: http://www.pfizerhelpfulanswers.com/pages/misc/Default.aspx

Scientific Journals & Medical Organizations

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American Academy of Dermatology: http://www.aad.org; Provides patients & health care professionals with up-to-date information, treatment & management of skin diseases. There is access to find a local dermatologist.

American College of Rheumatology: http://www.rheumatology.org; Provides geographic membership directory to find a rheumatologist, patient information on general topics and disease specific information, and links to clinical trials.

Annals of Rheumatic Disease: http://ard.bmj.com/

New England Journal of Medicine: http://content.nejm.org/

The Journal of the American Medical Association: http://jama.ama-assn.org/; JAMA: The Journal of the American Medical Association is an international peer-reviewed general medical journal, published 48 times per year by the American Medical Association. JAMA is the most widely circulated medical journal in the world.

Sun Protection and Other Products

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Aubrey Organics Natural Hair and Face Care Products: http://www.aubreyorganics.com

Aveda Allergen Free Make-up and Hair Products: http://www.aveda.com/index.tmpl?ngextredir=1

Beyond Bodi Heat: http://www.okamotousa.com

Covermark Cosmetics: http://www.covermarkusa.com; Offers cover up make up for lupus type rashes

Head Covers: http://www.headcovers.com; Offers nice head covers for those who have lost their hair due to chemotherapy

Heat Treat Warmers: http://www.warmers.com

Hot Headz Products: http://www.hotheadz.com

Medic Alert: http://www.medicalert.org

Smart Cover: http://www.smartcover.com; Offers cosmetics designed to cover up lupus rashes.

Solartex: http://www.solartex.com

Sun Precautions: http://www.sunprecautions.com

Sun Protected: http://www.sunprotected.com

SunGrubbies: http://www.sungrubbies.com

The Rocky Mountain Sunscreen Company: http://www.rmsunscreen.com; Offers sunscreen products for people who have to wear it daily, like lupus sufferers. Their products are PABA free, hypo allergenic, and Fragrance free.

Tom`s of Maine Natural and Chemical Free Items: http://www.tomsofmaine.com

Total Block: http://www.dermadoctor.com/search.asp; Offers SPF 60 cover up make-up for redness or butterfly rashes.

Traveling Abroad with a Chronic Illness

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Bringing Medications or Filling Prescriptions Abroad: http://travel.state.gov/travel/tips/tips_1232.html#medications; Tips for traveling abroad from the Bureau of Consular Affairs

Diabetes Resources: http://www.miusa.org/ncde/tipsheets/diabetesresources; Tips for people traveling with insulin.

Guidelines for patients traveling with prescribed controlled drugs: http://www.painpolicy.wisc.edu/internat/travel.htm; When patients travel abroad with prescribed controlled substances including opioid pain medications, they need to consider two sets of law: 1) the law of the country they are in and 2) the law of the country or countries to which they are traveling.

MedicAlert Foundation TravelPlus Program: https://www.medicalert.org/join/TravelPlusDetail.htm?selected=MedicAlert+Membership_TravelPlus; MedicAlert Foundation is a nonprofit membership organization providing personalized medical identification bracelets and necklaces with a 24-hour emergency response and medical information service. MedicAlert members have access to TravelPlus, a travel assistance program that offers an array of medical, personal, and information services specifically designed to provide protection and care for all travelers, regardless of pre-existing medical condition or age.

Mobility International: http://www.miusa.org/ncde/tipsheets/medications; Tips for traveling Internationally with medications

The Center for Disease Control and Prevention: http://wwwnc.cdc.gov/travel/; The CDC`s website on foreign travel for those with chronic illnesses and disabilities.

Transportation Security Administration: http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm; The TSA`s site goes over the rules for people with disabilities and their medications.

Web Sites of Foreign Embassies in the U.S.: http://www.state.gov/s/cpr/rls/dpl/32122.htm; A listing of U.S. Foreign Embassies and their contact information, in order for you to inquire about medication standards and more.