When you are newly diagnosed with lupus, you may feel helpless as to where to turn for reliable information. One of your first inclinations is to head to the vast world wide web for help; however, the internet is saturated with sites when you Google the word “lupus.” Do you ever wish you knew what sites offered the most accurate and trustworthy information? It can be confusing and overwhelming to try and peruse through them all. Thankfully, we, at More Than Lupus have your back and have compiled a streamlined list of our top (and most trusted sites) for the best lupus support.
For information on clinical trials, lupus research, and transparency of donations:
Lupus Research Alliance: The Lupus Research Alliance is an organization based in New York City whose mission is to investigate better treatments and ultimately prevent and cure systemic lupus erythematosus - through supporting medical research. In fact, the Lupus Research Alliance is the world’s leading private funder of lupus research. Due to a generous and supportive Board of Directors, 100% of donations to the LRA go straight to lupus research. There is NEVER a question of how or where their money is being used!
Additionally, the LRA advocates for the lupus community, advances lupus research through initiating clinical trials, and provides resources for those living with lupus. Two hundred million dollars has been dedicated from the LRA to cutting edge lupus research, with over five hundred grants being allocated to top research facilities.
The LRA also developed its affiliate, Lupus Therapeutics, to establish an advancement of lupus clinical research by finding more effective and safer treatments for people living with lupus. They are committed to finding and illuminating promising new treatment opportunities, and ultimately delivering them to lupus patients in just years, not decades.
Bottom line: The Lupus Research Alliance has the patients back, and has our seal of approval.
For more LRA information on clinical trials, click here.
For support groups and Facebook Live chats:
Michigan Lupus Foundation:
The Michigan Lupus Foundation is a non-profit volunteer organization devoted to helping improve the quality of life for people with Lupus and their circle of family and friends. They have been faithfully serving in Michigan and northern Indiana since 1974. The Michigan Lupus Foundation is working to build a brighter future for all lupus patients and their families. One way they do this is through their patients programs and support. They offer a variety of in-person and online support groups as well as bi-weekly Facebook “Lupus Lives.” These Facebook live sessions (led by individuals touched by the disease) are a good balance of information and inspiration. You will often see special guests, including Donna Oran, who penned “When Lupus Throws You For A Loop” and myself (among others).
For more information on their support groups and events, click here.
Looms for Lupus:
Looms for Lupus is a non-profit corporation providing resources and awareness to minority families and those affected by lupus, fibromyalgia, and other overlapping illnesses. Their aim is to create an environment to reassert a sense of hope during times of illness and to empower the individual to take charge of their life.
Looms for Lupus was founded in January, 2011 by three sisters (all of which have lupus or lupus overlap diseases). The sisters are very close and during their gatherings they began to loom knit as a form of therapy. It was then when the idea came about to start support groups and incorporate the art of knitting and other forms of Art Therapy to relieve Stress.
"The Mata Sisters” actively work with Lupus LA, Lupus Research Alliance, Lupus and Allied Diseases Association, Inc., More than Lupus, We Win Foundation, Howse Foundation and International Support Fibromyalgia Network and other local, national and international organizations. They have also raised money for Lupus Foundation of America, Lupus International, and other community organizations.
Looms for Lupus offers in-person and online support services in Spanish and English, and have become known (and sought out) for their impromptu translating to increase inclusion of minorities, in particular the Spanish-speaking lupus community.
For more information on their services and support groups, click here.
More Than Lupus:
Yes, we know ...shameless plug. But, not really. The mission of More Than Lupus is to provide programs and support for those living with lupus, advocate for their needs, and collaborate with other government and lupus organizations to strive toward improving quality of life, and ultimately finding a cure.
The vision of More Than Lupus is to bring awareness in a world where many still do not know what lupus is, nor take it seriously, and allow lupus to finally be recognized and supported by the public and government. Additionally, to provide desperately needed services to those living with lupus, so that no person feels like he or she is fighting alone.
More Than Lupus remains dedicated to being accessible to the patient, through our ground-breaking Facebook support chats, blogs, and lupus symposiums. More Than Lupus is also dedicated to improving minority health, and has partnered with many national organizations to combat systemic racism by challenging our medical institutions to "know better and do better" through our awareness platform called "The Lupus Butterfly Effect."
MTL offers weekly support chats and monthly in-person meetings that are an amazing way to foster connections with others in the lupus community from the comfort of your own home or office.
For more on MTL services, click here.
For educational sessions, doctor interviews, and symposiums:
Lupus LA, is a non-profit that was spearheaded by Daniel J. Wallace, MD (attending physician in the Division of Rheumatology at Cedars-Sinai Medical Center and a clinical professor of medicine at UCLA’s David Geffen School of Medicine) in 2000 along with a concerned group of lupus families. Lupus LA is dedicated to finding the causes of and a cure for lupus while providing support, services and hope to all who have lupus. Lupus LA raises funds for our three core values: supporting medical research, providing patient services, and promoting awareness and advocacy.
Lupus LA raises awareness through events along with extensive local, regional and national media coverage – in print and on TV, radio and the Internet. This is made possible through the support of Hollywood – both celebrities and industry executives.
However, what we love MOST about Lupus LA is their vast array of online health videos, educational symposiums, and doctor Q&A’s.
For more on Lupus LA’s educational sessions and patient resources, click here.
Lupus Foundation New England:
The mission of the Lupus Foundation is to educate and support people with lupus, promote awareness and fund scientific research that will lead to better treatments and ultimately a cure. Their newest virtual series called, “TILLY” (The Interactive Lupus Link for You) is hosted by Marissa AKA “Lupus Chick” and features a collection of diverse special guests and topics.
Check out TILLY here.
For fantastic Facebook pages that provide lupus Inspiration and information check out:
For advocacy and policy movers and shakers:
Lupus and Allied Disease Association, Inc.:
For the past 41 years, the Lupus and Allied Diseases Association, Inc. (LADA), has been providing education, support, and outreach services for people impacted by lupus and allied diseases while wielding the patient voice as a catalyst to advance awareness, advocacy, and research initiatives. LADA has spearheaded advocacy efforts and initiatives to “amplify the patient voice” while pushing for better practices in the areas of step therapy, drug development, and patient rights (just to name a few). They are a strong national organization with tenacity and vigor, always "fighting the good fight" for patient's rights.
For more information on LADA’s advocacy efforts, click here.
Lupus Foundation of America
Lupus Foundation of America works to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. Founded in 1977, the LFA is a national voluntary health organization based in Washington, D.C. with a network of chapters, offices, and support groups located in communities throughout the United States. It is the largest national lupus organization in the US, and because of their size, they offer a strong presence when it comes time to advocate for more research funding through the DOD and NIH.
For more information on the LFA’s advocacy efforts, click here.
For diversity and inclusion:
The Hospital for Special Surgery:
Hospital for Special Surgery offers more lupus support and education programs than any other hospital in the United States. The department of Social Work Programs, in collaboration with the Lupus and APS Center of Excellence, brings together patients with lupus to help them and their loved ones cope with a new diagnosis, clarify treatment options, locate community resources, and provide ongoing support. Their programs are diverse, inclusive, and culturally tailored, offered in English, Spanish, and Chinese, and are developmentally specific.
HSS offers free programs that reflect their comprehensive approach to care for people with systemic lupus erythematosus. Through these programs, you can learn about your illness and learn to live more fully - both from health care professionals and from others who have the same illness.
Check out these amazing programs provided by HHS:
LANtern® (Lupus Asian Network) is a free national support and education program for Asian-Americans with lupus and their families.
SLE Workshop is a monthly education and support group for people with lupus, along with their family and friends.
LupusLine® is a free national telephone peer counseling service focusing on one-to-one support for people with lupus and their families
Charla de Lupus (Lupus Chat)® is a free national peer health education and support program for Spanish-speaking communities with lupus.
Teen and Parent Lupus Chat Groups are monthly in-person chat groups for teens with lupus and their parents.
We hope you find this information helpful as you navigate all the resources that are available, and, as always, know that More Than Lupus is there for any questions along the way.
(some verbiage was taken from website descriptions)
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.