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Lymphatic Education & Research Network

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Nonprofit Overview

Causes: Health, Medical Research

Mission: Lymphatic Education & Research Network (LE&RN), formerly Lymphatic Research Foundation (LRF), is a nonprofit organization founded in 1998 to fight lymphatic disease and lymphedema through education, research and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

Results: LE&RN is at the forefront of raising awareness of lymphatic disease and lymphedema. Founded in 1998 as the Lymphatic Research Foundation, LE&RN provides annual grants to Research Fellows at the world’s leading universities, putting lymphatic diseases on the radar in the medical community, in academia, in government, and with pharmaceutical companies. Through LE&RN’s education programs, such as our popular Medical Symposium Series, medical practitioners, therapists, patients, and family members can benefit from hearing presentations given by the world’s leading lymphatic and lymphedema experts. LE&RN’s Patient Registry and Tissue Bank provides researchers with access to information about those afflicted with these diseases and can provide tissue samples from lymphatic disease patients to further research discoveries in the field. The quarterly journal Lymphatic Research and Biology delivers the latest developments and advancements in lymphatic biology and pathology from the world’s leading biomedical investigators. Through events such as the annual Walk for Lymphedema & Lymphatic Diseases and through advocacy efforts such as fighting for passage of the Lymphedema Treatment Act, LE&RN is building an extensive network of people looking for answers, demanding better treatment options, and, ultimately, finding a cure so that no one will have to suffer with lymphedema and other lymphatic disorders.

Target demographics: fight lymphatic diseases and lymphedema

Direct beneficiaries per year: fund researchers worldwide, and brought our educational symposiums to tens of thousands.

Geographic areas served: the United States and internationally

Programs: research, education and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

Community Stories

54 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

I was graduated of faculty of medicine.after that ,I specialized in vascular surgery field.there are many patients suffer from lymphedema for many years without hope.After searching and contact health professionals ,I can say we could defeat this disease soon.What I am trying to do is gathering experience all over the world to help lymphie people in my country and global wise

Jeni V.

General Member of the Public

Rating: 5

Lymphatic Education & Research Network is a wonderful organization that has helped many with Lymphadema.

Volunteer

Rating: 5

Lymphedema is a very isolating disease. No one knows about it or understands it. And there is no cure. Doctors and clinicians don't learn about it in medical school. I lived with this disease for 15 years before I knew anyone else that also had it. I am so thankful I found LE&RN 2 years ago. Being a member of LE&RN has changed my life and I am so grateful for everything they do. And what they do is so wonderful. They are the vehicle that brings doctors, clinicians, vendors, researchers and patients together. They also provide educational materials about the disease with their symposium series. They provide lobby days and opportunities for advocacy. They provide grants for research so hopefully one day soon there will be a cure. I am proud to be part of such a wonderful organization. They have truly changed my life. Thank you LE&RN!

Client Served

Rating: 5

When I found out that I have breast cancer, I called LE&RN to find out what questions I should ask my breast surgeon about her plans to help me avoid or handle lymphedema. I received great assistance with good questions. I also information on a fairly new surgical strategies that would also help me to possibly avoid this disease, too often a secondary result from the removal of lymph nodes during cancer surgery. I was able to connect with Memorial Sloan Kettering doctors for my mastectomy and reconstruction surgeries, who are involved in lymphedema research and who apply these new techniques. I highly recommend that people support the work of LE&RN so that more doctors receive training in this preventative surgery and therefore, more women and men are able to live positive, familiar lives post-surgery!

Client Served

Rating: 4

I've had lymphedema for nearly 17 years, after surgery for Metastatic Melanoma. From a patient perspective, I take great comfort in knowing that LE&RN is helping research move forward in the quest for effective treatments for lymphedema.
Right now, what I really benefit from is the education side of this organization, with the shining star being the amazing LE&RN website. The Symposium Series alone has a multitude of video presentations by leaders in the field of lymphatic studies. I have utilized the Ask The Expert feature to obtain information about my situation that my primary care doctor is not equipped to answer. And the LE&RN Expo is a great source of information from the various compression manufacturers.
I was happy to participate for the first time in the LE&RN walk in Santa Monica and am a supporting member of this wonderful organization.

Barbara H.2

General Member of the Public

Rating: 5

I am a 6 year cervical cancer survivor that now suffers from lymphedema in my left leg. Finding LE&RN was a blessing for me. Not only did I not feel alone anymore but found a community of people dedicated to helping connect people to doctors and therapist, bringing awareness, finding cures is so important. The website is full of so much valuable information. The 5k walk in California was one of the most up lifting events I have done. Through them I became aware of a clinical drug trial and was lucky enough to be included. Medical research is so important and LE&RN is committed to helping the world find a cure.

Sarah B.11

Client Served

Rating: 5

LE&RN has a wonderful collaborative culture that engages patients, caregivers and providers to work together to educate the world about LE.

Volunteer

Rating: 5

I've had Lymphedema for over 12 years and likely had Lipedema for over 20 years. I becane a member of LE&RN in 2015 when I found out what LE&RN does. I then started a Colorado Chapter of LE&RN in 2016. LE&RN is a life-changing non-profit organization.

Volunteer

Rating: 5

LE&RN is an outstanding non-profit providing a great resource for patients, therapist, doctors, care-givers and all who need or want information on lymphedema and lymphatic diseases. LE&RN is creating awareness and taking action on lymphedema and lymphatic diseases. I am honored to volunteer with LE&RN and be a voice for the millions who suffer from lymphedema and lymphatic diseases.

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Volunteer

Rating: 5

LE&RN offers a wealth of information and support globally to all who suffer from lymphatic diseases. As someone who suffers from Lymphedema, LE&RN helped me find a doctor to treat my condition.

Volunteer

Rating: 5

I have secondary lymphedema in my right leg, a result of cancer treatment (lymph nodes removed + radiation). For a long time I felt very alone until I learned about the Lymphatic Education & Research Network. Through LE&RN I have made many friends who also have to deal with lymphedema on a daily basis. Through LE&RN I now have a voice in the Lymphedema and Lymphatic Community so that we can continue our fight for better awareness, better treatments, better health insurance coverage. LE&RN and its paid and lay leaders are incredible.

Previous Stories
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Volunteer

Rating: 5

I have had secondary lymphedema in my right leg for over seven years. The Lymphatic Education & Research Network (LERN) is my go to source for scientific data, community support, updates on the latest in compression and devices, our annual fundraising walk and more. Without LERN , those of us with Lymphedema would be lost. It is a warm and incredible resource and community.

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Volunteer

Rating: 5

As a patient living with primary lymphedema for 20 years, I could not have found the resources necessary to manage my medical condition without the help of the Lymphatic Education and Research Network. The LE&RN team are warriors, laser focused on their mission of wiping out lymphatic disease. They have armed me with information to seek proper medical treatment, they have connected me with a network of people who have provided critical support to cope with the disease, and they have developed concrete action steps that I can take to join the fight against lymphatic disease. Most importantly, they have given me something that lymphedema nearly stripped away - hope.
- Britta Vander Linden, LymphedemaDiary.com

1 Candy-Cornett

Donor

Rating: 5

I cannot say enough wonderful things about this great group of people. They become like family when you get involved by donating and volunteering. I found out about this wonderful group through my favorite actress of all time Kathy Bates. She is the national spokesperson for LE&RN. As her #1 fan I have made her passion my passion. It is through her that I learned about this nonprofit and how many millions of people who suffer from these awful lymphatic diseases around the world including herself. She along with other celebrities have used their status to bring awareness out of the dark and into the limelight. Kathy joined LE&RN and supporters going before Congress twice, once in 2017 and again on May 10th and 11th of 2018 to ask for funding for education and research. LE&RN has accomplished in getting lymphatic diseases covered under insurance in a few states. We have so much more to go, but with the continuing support from everyone involved, I can see these lymphatic diseases being covered by most insurance companies in all states. I have been a member of LE&RN for a year now. In honor and support of Kathy and LE&RN, for last two years, I have flown out to California for the annual lymph run/walk to volunteer my time and to bring an extra donation. It also allows me the opportunity to meet and speak with my favorite actress of all time. I also want to thank Colleen McGuire who runs the events for LE&RN and William Repicci, LE&RN Executive Director and CEO and all others who have graciously welcomed me into their family.

1

Volunteer

Rating: 5

LE&RN is an outstanding non-profit: they effectively disseminate educational information to their membership and the general public on lymphedema and related lymph system malfunctions; they lobby governmental bodies to obtain the rights, benefits and funding which should legally accrue to sufferers; they initiate and fund R&D as well as professional education in the field of lymphatics. They are responsible for bringing lymphedema out of the closet into the arena of major health malfunctions deserving of a cure. I am proud to be a member.

1 Shana G.

General Member of the Public

Rating: 5

I love that LE&RN has webinars that are free on topics that are unique and difficult to find. They really bring together a diverse group. Recently as this week a lecture by Mr. Klose from Klose Lymphedema school spoke on benefits of traditional manual lymph drainage versus the use of pumps and or wraps for reduction. I learned so much. It also give me a legitimate resource to refer my physician to who needs more training in Lymphedema.

2

Volunteer

Rating: 5

LE&RN offers a wealth of information and support globally to all who suffer from lymphatic diseases. As someone who suffers from Lymphedema LE&RN has help me find a doctor to treat my condition.

2

Donor

Rating: 5

I'm so grateful for LE&RN; this non profit keeps us up to date on research and everything possible that can be done to help us with Lymphedema. We can feel confident that we are receiving the best knowledge that is out there about this disease

2 Susan G.2

General Member of the Public

Rating: 5

I have primary lymphedema and struggle to find resources to learn about it. I read about the research being done on low carbohydrate (ketogenic) diet from this site. Within 2 months of trying this diet my limbs were measured and all 4 had decreased by 15-16%. My Lymphedema Dr and his whole team were unaware of the research. Thank you Lymphatic Education and Research website. Best advice I have received so far!

2 katiedarcy

Client Served

Rating: 5

I have Lymphedema and live on the Delaware Shore. lEARN has offered me a sense of community and eased my isolation. I have learned about treatment, and procedures to aleaviate the symptoms. The doctors in my area know very little about this disease and I am so greatful to LEARN for empowering me. I would be hopeless without LEARN. Because of this organization I can control the disease, work full time and participate in my community. I recommend the website to everyone I meet who suffers with Lymphedema, and they are relieved to know they are not alone. It is so important to educate not only the patients but the DOCTORS! More has to be done to treat this disease. Surviving cancer was one thing, but being sentenced to a life with Lymphedema is the harshest reality of my life. It has to be cured, we just need more research.

2

Professional with expertise in this field

Rating: 4

Personally and professionally I have been helped immensely by LE&RN.... sharing their research and knowledge is invaluable. It is a salient feature that their commitment in this field to be commended.

2

General Member of the Public

Rating: 5

After breast cancer and a lumpectomy, I developed lymphedema in my right arm. No one told me after the breast cancer surgery about lymphedema. Only after my arm swelled and I went to a physical therapist did I learn not to lift more than 5 lbs. Some of my pots and pans weigh more than that! When I heard Kathy Bates talk about her lymphedema, and the orgaanizaton LEARN, I joined immediately. LEARN has given me hope for a better quality of life, living with the lymphedema. Their research on options to take care of lymphedema, especially transplanting lymph nodes from different areas of the body. LEARN is dedicated to raise the public awareness of this dreaded disease. More research needs to be done to find a cure. LEARN is on the cutting edge of research and helping to raises the awareness of the medical field. I don't think doctors know that much about lymphedema. I have been hospitalized for six days, twice in a year and a half from cellulitis in my arm. I had peeled an orange with my fingers and one finger became sore. Sure enough, it caused cellulitus. I feel confident that LEARN will find a cure, and educate patients as well as the medical field and lead the way in finding other options.