Navigating the challenging world of lupus can be daunting and confusing. Valuable resources for education, support, and financial/legal assistance are plentiful but can be difficult to filter. Molly’s Fund Fighting Lupus is continually updating and vetting a list of internet resources for education, support, and financial or legal assistance, among other topics.
Please let us know if you have suggestions to add to these resources, or links you have found useful! Contact us at [email protected].
211 Info is a great resource for Oregon and SW Washington State. Just dial 211 on your phone, and a representative will help connect you with a wide variety of health and community services. Learn More
Not in Oregon or Washington? Please click here to see if there is 211 service in your area.
Check to see if you are qualified for Disability Benefits through Social Security and learn what services you as a Lupus patient can benefit from. Learn More
Additionally, check out these additional links to find discounts on over 50,000 medications.Oregon RX Card MedicineCoupons.net
OK Copay is a great resource especially for those uninsured or those who have high deductible plans, and will help you determine pricing or comparing healthcare providers. Anyone paying out-of-pocket for their healthcare wants to know how much they’ll pay ahead of time.
NeedyMeds is a national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs. The NeedyMeds Drug Discount Card may save you up to 80% off the cost of your prescriptions, OTC medications and pet prescriptions purchased from a pharmacy. Learn More
An excellent guide to lupus provided by the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
A great resource with many programs and services for lupus and other chronic illness patients. They also have links and downloadable PDF files in multiple languages. Here are some great links on their website:Lupus Patient Support Program List Lupus Chat: Connect, Support and Share SLE Workshop: Support and Education Program Lupus Line: National Telephone Peer Support Program
The Arthritis Foundation‘s guide to causes, symptoms, and treatment for systemic lupus erythematosus. Learn More
Lupus and the Skin: The American Academy of Dermatology’s has a great tool to help you find a dermatologist near you for skin related lupus complications. Learn More
Here is a great link for a medical tutorial on lupus: Lupus Tutorial
The National Institute of Health and Human Services offers free, multi-lingual printed information in PDF form on various health topics, including lupus. You may order up to 10 different titles through their online form.
Click here to find trials
Antidote is a digital health company on a mission to accelerate the breakthroughs of potentially life-saving treatments, by bridging the gap between medical research and the people who need it. Their clinical trials search makes it easy to quickly and efficiently sort through the trials listed in ClinicalTrials.gov to find the trials that might work best for you. Answer a few questions to find your matches. Start searching here:
Click here to find trials
Clinical Trials for Lupus
Search for clinical trials across the United States with this tool designed by the National Institutes of Health.Click here to find trials
Create a free of charge, private, web-based community to organize family, friends, neighbors, and colleagues during your journey with lupus. Easily coordinate activities and manage volunteers with our intuitive group calendar. Communicate and share information using announcements, messages boards, and photos.
Nicole Paxson produces a cosmetics line with a high level of sun protection for lupus patients. Email: [email protected]
Proponents of this eating plan argue that it can boost immunity, and ward off a number of infections, illnesses, and maladies.
Unlimited Choices is a Oregon-based non-profit agency, which provides accessibility solutions for the homes of people with disabilities.
All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.
To purchase this book please email us at [email protected]
The Fairy and the Wolf: A Story about Lupus By Molly McCabe, Jaime Gault, and Nicole Lawry. Illustrated by Lily Pham. A Children’s Story about Lupus: Bobby learns that the mother he thought he knew has been afflicted with lupus. Follow him on his journey as he meets Lupus the wolf and how Miss Fairy guides him on his path to understanding lupus. This is a must-read for any family affected by this debilitating disease.
By Alexis C. Rizzuto But Why? Lupus explores a young person’s experience with the diagnosis of systemic lupus erythematosus (SLE), more specifically, lupus nephritis, SLE. This thoughtful book explores the stages from diagnosis through remission by allowing the reader to enter the lives of one family.You can purchase this book on Amazon, or email [email protected] for more information.
New Author Sheds Positive Light on Living with LupusRELEASE DATE: OCTOBER 21, 2013. WORLDWIDE.
In the book: Lupus: My Constant Companion and Greatest Inspiration, a woman shares her journey of living with Lupus. Through gaining an awareness of the disease as well as the triggers at a physical, emotional and spiritual level, she was able to realize that almost every symptom, side effect and medication could be managed (and counteracted in some cases), which enabled her to regain much of the energetic life she once had. She provides concrete tools to support self-discovery for the reader to apply to their own life to achieve a sense of balance and become an active decision-maker towards their own well-being.
By: Dr. Donald E. Thomas, Jr., M.D., FACT, FACR The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals—all will find here an invaluable resource. Illustrated with photographs, diagrams, and tables, The Lupus Encyclopedia explains symptoms, diagnostic methods, medications and their potential side effects, and when to seek medical attention. Dr. Donald Thomas provides information for women who wish to become pregnant and advises readers about working with a disability, complementary and alternative medicine, infections, cancer, and a host of other topics. Print out this flyer for a special 30% discount/order form: The Lupus Encyclopedia
Jonny is a little superhero with a big problem.
His Mom is sick. How can he help? Join Jonny and Bear as they go to the hospital to investigate.
LEARN who the staff working in the hospital are and what they do. DISCOVER Jonny’s secret weapon. BECOME EMPOWERED to offer practical help to a sick person.
A perennial bestseller, Lupus Q&A is the go-to guide for sufferers of a chronic autoimmune disease that affects more than 1.4 million people in the United States alone. Characterized by achy joints and skin rashes, lupus often mimics other diseases, making it tricky to diagnose and treat. In this completely revised and updated edition, Dr. Robert Lahita and Dr. Robert Phillips—leading experts on lupus—discuss topics in a clear, concise, and easy-to-follow Q&A format.
“Lupus and scleroderma are our shadows but they do not define us. We may have to wear the ugly dresses of chronic illness but we don’t have to be the ugly dresses.” — Linda and Karen
If you are experiencing a long-term illness or disability, this book is for you — as well as your family and friends. The authors share a collection of deeply personal stories and poetry to describe their journey from illness to health, well-being, and fruitful living. Their creative life management strategies provide a road map to help you: