Our Resource Center

How-Can-We-Help-2Navigating 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].  

Financial and Legal

Dial 211 for Info

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.


 

 

 

Apply for Disability Benefits

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


Prescription Assistance Programs

Get help finding low/no-cost prescriptions through the Partnership for Prescription Assistance or Patient Assistance Programs.

Additionally, check out these additional links to find discounts on over 50,000 medications.

Oregon RX AssistanceOregon RX Card
MedicineCoupons.net

 

Saving Money on Medical Costs

logo-3OK 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. 

Learn More


 

logo-4NeedyMeds 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

 


 Medical: Caregivers and Resources


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Find a Rheumatologist
 in your area that’s right for you through the American College of Rheumatology’s database.


Us in Lupus

A great resource with symptom checklists, a journal tool and tips for speaking with your medical caregiver, generously provided by Glaxo Smith Kline. Learn More

 

Web MD and Mayo Clinic Lupus Center


WebMD on Lupus
Mayo Clinic on Lupus
 

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Handout on Health: Systemic Lupus Erythematosus

An excellent guide to lupus provided by the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Learn More


Hospital For Special Surgery

HSS-logo-1A 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


af-logo-2015-1The 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




m_logo-1MedlinePlus is a great source of lupus information and resources.
Learn More
 
 

Here is a great link for a medical tutorial on lupus:  Lupus Tutorial


The Office of Women’s Health

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WomensHealth.gov is an excellent women’s health resource, and a key sponsor of the “Could I have lupus?” campaign. Their downloadable Lupus Fact Sheet is a fantastic resource.

Learn More


National Center for Complementary and Alternative Medicine

logo-5NCCAM’s website provides access to the latest research and clinical guidelines on a wide variety of treatments.

Learn More

 

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.

Learn More


Healthline’s Rheumatoid Arthritis Center 

hl-logo.v1.20170103194337-1Informational website with focused efforts on offering readers and visitors objective, trustworthy, and accurate health information.

Learn More

Research and Trials

Lupus Research Alliance

lra_rgbAs in all fields of scientific inquiry, lupus research has been greatly advanced by the pioneering studies of brilliant scientists — and the caring people who participate in clinical trials. In these studies, scientists and laypeople work together to find safer, more effective methods to diagnose, prevent, treat, and ultimately cure diseases.

Click here to find trials


Trial Reach

Antidote_Logo_CMYK_HRA service dedicated to making clinical trials faster, simpler, and more focused on patient needs. They are working to facilitate the vital connections needed between patients and research teams because it is through this collaboration that progress can be achieved. They want you to be able to find, understand and connect with clinical trials available to you.

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


Community and Awareness Building

Rainbows for All Children

http://rainbows.com 


Lotsa Helping Hands

http://www.lotsahelpinghands.com/

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.


Health, Nutrition and Lifestyle

Nicole Paxson Cosmetics

http://nicolepaxson.com/default_npax.asp

Nicole Paxson produces a cosmetics line with a high level of sun protection for lupus patients. Email: [email protected]


The Anti-Inflammatory Diet

http://www.webmd.com/food-recipes/features/anti-inflammatory-diet-road-to-good-health

Proponents of this eating plan argue that it can boost immunity, and ward off a number of infections, illnesses, and maladies.


Unlimited Choices

http://www.unlimitedchoices.org/

Unlimited Choices is a Oregon-based non-profit agency, which provides accessibility solutions for the homes of people with disabilities.


Recommended Books and Other Reference Materials

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.

 

The Fairy and the Wolf $12.95


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.

To purchase this book please email us at [email protected]

But Why? Lupus

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.

Lupus: My Constant Companion and Greatest Inspiration

New Author Sheds Positive Light on Living with Lupus

RELEASE 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.

The Lupus Encyclopedia, A Comprehensive Guide for Patients and Families

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

What Does Super Jonny do When mom Gets Sick?

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.

Visit www.SickMom.com to learn more and purchase the book

Diagnosed during her high school years, the author decided to keep a personal diary of her confusion, fear, and challenges of being diagnosed with Lupus. Lupus, also known as Systemic Lupus Erythematosus (SLE) is a disease that can affect many different body systems, including the joints, skin, kidneys, blood cells, heart, and lungs. Lupus is more common in women than in men. Research continues to be done on finding a cure for this life-threatening illness. This diary records thoughts and feelings for being diagnosed, to understanding and accepting the reality of living life with Lupus.
 
 
 

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.