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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 diseases (LD), such as lymphedema (LE), lipedema (LI), and lymphatic malformations (LM), 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 (LD), including lymphedema (LE), lipedema (LI), and lymphatic malformations (LM)

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 diseases.

Community Stories

105 Stories from Volunteers, Donors & Supporters

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.

2

Professional with expertise in this field

Rating: 5

As a lymphedema and wound therapist I rely on LE&RN to get updated information to keep abreast of any of new developments in patient care. I also know that it is a site that I can send curious patients to where they will get tried-and-true information about their diagnosis that will help in their compliance and adherence to care. Other sites may give anecdotal info but here I can trust what is on the site as best practice. Thanks for making my job easier and my patients healthier.

2

Volunteer

Rating: 5

It's a great nonprofit, that helps educate about the lymphoderma.

2 Fleur N.

General Member of the Public

Rating: 5

LE&RN are passionate and committed to raising awareness of Lymphedema and providing a network of support to sufferers. Their work is also vital in raising funds for research and a potential cure. This is a great non profit!

2 Becca K.

Volunteer

Rating: 5

LE&RN has helped so many people! The Lymphedema and Lymphatic Disease community are getting the attention they need to fight LE and LD. I am so proud to be a part of this organization. Stay strong and fight on!

Previous Stories
2

Volunteer

Rating: 5

LE&RN has opened the eyes of the world. Lymphedema and lymphatic diseases are more common than anyone would like to believe. Their dedication to Education and research is phenomenal. So many changes in the lymphatic community have happened over ther years because of the research this organization helps fund. As a Lymphedema patient, I can honestly say they were a lighthouse in the midst of a storm. Thank you LE&RN!!!

2

Professional with expertise in this field

Rating: 5

I am a Newly certified CLT in Saskatchewan, Canada . I requested to join this support group to help me design a lymphedema clinic in Saskatchewan. I wanted to hear the stories of those affected with lymphedema so I can create a clinic that helps lymphedema suffers in my province. Saskatchewan does not have a support group and after seeing the support and education this group provides its members I would love to try and create a support group similar to this one on Canada. .I give this non profit group a gold star! I learn so much about the daily struggles , finding a CLT or knowledgeable doctor, compression questions and just the overall support each member provides to one another, its amazing!Lymph Strong is the best..

2 Ellen W.1

Client Served

Rating: 5

LEARN does an excellent job spreading knowledge about lymphedema. This organization is working on getting The Lymphedema act passed. This would help lymphedema patients obtain insurance for lymphedema treatment.

2

Donor

Rating: 5

LE&RN has changed my life with its support and cutting-edge research and information. This organization gives me hope for a cure for Lymphedema. I have had this disease for 23 years. I have been a supporting member for almost 2 years.

2 Keri Therese N.

Volunteer

Rating: 5

I Love IT! They are so Supportive and knowledgeable about Lymphedema!

2 Lisa A.2

Donor

Rating: 5

LE&RN was there when I realized my unexplained swelling was not going away but my doctor was not taking me seriously. With LE&RN's great information and assistance, I was able to advocate for myself and get the treatment I needed. The staff is wonderful and kind, and the organization as a whole is helpful and necessary. Love LE&RN!

1

Client Served

Rating: 5

This is the only charity of its kind and without it we would still be back in the dark ages without any social or political recognition or understanding of Lymphoedema and its effects on those of us profoundly personally (physically, socially and psychologically) impacted by Lymphoedema. Finding out about LE&RN seven months ago has given me hope that there may one day be a cure for the Lymphoedema that has utterly turned my once athletic life and day to day life upside down since 2015. Being able to cling to hope, knowing the dedication LE&RN has to myself and others with Lymphatic diseases, is in large part what has helped me overcome the deep depression I found myself in for months after diagnosis 16 months ago. Without LE&RN, research/cure funding would not exist as it now does, political/governmental initiatives would not exist, and those of us enduring dehabilitating lymphatic diseases would be without hope that we may ourselves benefit from a cure in our lifetime. LE&RN has made it possible for me to feel I can and want to stand up and fight the disease, and win!!

1

Client Served

Rating: 5

I have been a supporter of this charity for over 4 years now. This year they helped get NYS honor my 5 year old as a youth ambassador for Lymphedema and Lymphatic Disease and recognize Marh 6th as World Lymphedema Day! We need more awareness, support, and research to help our loved ones fight this disease! LE&RN strives for just that.

1

Volunteer

Rating: 5

Thanks to LE&RN so many from around the world are able to come together and fight Lymphedema.

When I met the folks at LE&RN back in 2011, I felt alone and afraid of what my future held. Now 5 years later and I have met thousands of Lymphatic patients and with the help of LE&RN been able to direct patients to them for education and hope. Without Research our hope would be totally lost.

Thank you to LE&RN for continuing to provide hope, faith, education and research!!!!

1

General Member of the Public

Rating: 5

LE&RN is an excellent source of education and compassion for lymphatic diseases. I've had Lymphedema and lipedema for most of my adult life and finally found a community that gives so much back to research and education. They also have wonderful people who volunteer for them

2

Volunteer

Rating: 5

I was one of many with lymphedema who was misdiagnosed for years and years. I went from doctor to doctor, was put on diuretics for "water weight", and found that no one could help me with the enormous pain, stiffness and swelling in my lower legs and feet. I finally found out what I had only two years ago, at the age of 63, when I was introduced to a physical therapist with a specialty in treating lymphedema. I still felt very alone, until one night when my husband was flipping TV channels and happened upon Kathy Bates being interviewed about her own battle with lymphedema and the organization she was spokesperson for -- LE&RN. I was thrilled and immediately went on the website to sign up for the newsletter. I now hope to encourage and support others as co-chair of LE&RN's Florida Chapter. This is a very worthwhile nonprofit, and an organization which deserves recognition for the help and awareness it provides to both those who have lymphedema and those providing treatments and hopefully one day cures.

2

General Member of the Public

Rating: 5

Being in the dark for so many years thinking I was the only one out there until I came across LE&RN. This organization has not only helped me find myself again but it has given me hope with the amount of research that has been going on thanks to them. I am now a Co-Chair for the Missouri Chapter and very proud to be part of this organization. I am no longer a lone.

3

Volunteer

Rating: 5

Born with Lymphedema, I have had many experiences less than ideal with those in the medical field. After so much confusion, I found LERN. I have learned so.much from the connections I have made with others that live with Lymphedema everyday! LERN is doing amazing things!!

3

Board Member

Rating: 5

LE&RN has commenced a very important mission. Lymphedema, both genetic and acquired, is severe and debilitating disease surrounded by an unusual social and medical stigma. There are only very few existing treatment options and virtually none in development. The only option is to increase the social, political, governmental, institutional and financial awareness, transparency and support for the necessary new treatments. LE&RN has managed in the past three years to increase the awareness for the disease and suffering patients with minimal resources. However, there is still long way to go to reach the same amount of broad public awareness, support and research as has been generated to support for instance the victims of Multiple Sclerosis. Lymphedema patients are in high need of new medical solutions and we all have to support LE&RN as much as we can!
Riku Heikki Rautsola, Ph.D.

4

Volunteer

Rating: 5

The Lymphatic Education & Research Network is doing incredibly important work. They are bringing awareness to an under-represented, under-discussed health condition (lymphedema) that impacts millions of people worldwide. They are raising funds to support medical research, in search of better treatments and, ultimately, a cure for lymphedema and other lymphatic diseases. The individuals at LE&RN are committed, communicative and conducting work of the utmost importance.

4

Donor

Rating: 5

I came to know the word Lymphedema 9 years ago. I had been dealing with horrible bouts of infections on my legs and even cellulitis multiple times. When I tried to speak with doctors and other medical professionals about my legs, all they could do was blame it on my weight issues instead of actually taking the time to learn about the disease. It has been such a struggle to not only live with but teach others about this condition. I came across LE&RN earlier this year and it has changed my life. I became a member after reading about all that LE&RN is doing for "Lymphies" like me. I found that Kathy Bates was holding the first annual 5K in California this year, so I knew I had to be apart of it and flew from Colorado just to walk my first 5K and spread awareness for this disease that has been sheltered and swept under the rug for far too long. After years of feeling alone, I finally feel like I have a family who knows what I go through on a daily basis thanks to LE&RN. LE&RN is saving lives!

5

Volunteer

Rating: 5

At 6 weeks old, our son was diagnosed with a rare lymphatic disorder called Intestinal Lymphangiectasia. As a result, he has a restricted diet, loses protein through the gut and has lymphedema in the abdomen and lower extremities. There is minimal research and no one had any answers for me in order to help my son. Through extensive searches, I came across LE&RN. Immediately I knew this was the organization that was going to help my son and those like him. Through the 4 plus years we have been involved research has been funded, symposiums are provided for patients and professionals and the diagnosis of lymphedema has been made known. In 2011, my son became the youth ambassador for LE&RN. He has been to Albany twice to advocate for those affected by lymphatic disorders with LE&RN staff standing beside him. Besides funding research and working towards a cure, LE&RN has given my son confidence, hope for a cure and the realization that he is not the only one suffering with lymphatic disorders.

I have watched this organization grow through the years and look forward to the work that is to come. I am proud to have my son as the ambassador and also being involved in the NY state chapter.

5

Volunteer

Rating: 5

My daughter Emma was diagnosed with Primary Lymphedema from her toes to her belly at 18 months old, she's 7 now. At first we were thrilled to finally have a diagnosis, until we realized there was no where to turn for efficient help. We fought with our insurance company for 6 months before they would even cover the most basic treatment (MLD) and are still fighting to this day on issues such as compression garments. The lack of knowledge surrounding Lymphedema in the medical community is astonishing. As a mother, these kinds of issues were literally killing me-after being diagnosed with a panic disorder due to my daughter's disease and watching her suffer through 3 bouts of hospitalizations due to cellulitis, I knew if I didn't help to bring about change, no one would. That's when we found Lymphatic Education & Research Network. They are our saving grace, mentally and physically, in bringing about change to the disease that affects every decision we make, every day of our lives, in order to keep our daughter safe and healthy. In the past 2 years since we've joined forces with them, we've watched Lymphedema establish a name for itself. We've watched LE&RN fund groundbreaking research and helped them to pass a bill that was ignored for 12 years in the NYS Legislature. Their advocacy for all lymphatic diseases is top notch. LE&RN is the organization that is going to change the lives of everyone who suffers with a lymphatic disease for the better....they already are. LE&RN has changed our outlook of Emma's future, it looks brighter and healthier for us all and without them, I'm not sure where we would be. Lymphatic Education & Research Network-from the bottom of our hearts, we thank you for changing our lives!

7

General Member of the Public

Rating: 5

My daughter was diagnosed with Lymphedema at age 11. She was told by her doctors she would just have to live with her swollen foot. It wasn't until she was in her early 20's, and decided to do her own research that she was able to get some answers. Those answers came from LE&RN. Through this wonderful organization she was able to get a better understanding of what was happening to her. She has since become very involved with LE&RN and wants to spread the word to help others who have Lymphedema know that there is help out there.

7

Volunteer

Rating: 5

LE&RN has changed my life. I was diagnosed with primary lymphedema 16 years ago at age 11. The team of doctors who evaluated and diagnosed me told my parents that there was nothing they could do, even though the swelling might get worse. I went on for the next 12 years with no treatment or management, and every doctor I went to for varying reasons had no idea what lymphedema was and always told me to get an over-the-counter compression stocking at the nearest drug store. It was only when I started doing my own research that I found LE&RN. This organization introduced me to information, resources, and a world of fellow lymphedema sufferers that I had no idea were out there. They are 100% dedicated to spreading awareness about lymphedema and making it a relevant topic in the medical community. They have symposiums recorded and streaming live on their website featuring leading professionals in the field. Their social media accounts are always up to date and post interesting and exciting events/news. I have had the privilege of meeting the Director and a couple of other staff members—all of whom are some of the most compassionate and dedicated people I have ever met. They fueled a passion in me that I didn’t know existed, and have inspired me to join this fight against lymphedema. Everyone who is affected by lymphedema needs to know about this organization!

7

Board Member

Rating: 5

The Lymphatic Education & Research Network (LE&RN) has undergone a tremendous level of change over the past few years. LE&RN has always done an effective job of bringing the Lymphatic system to the forefront of the research community through its funding of such research. It has now added an educational component to its mission. In addition to funding lymphatic research, LE&RN has: created a tissue bank/patient registry to foster increased independent research; developed a webinar series to educate patients and doctors to become more aware of what is happening with lymphatic disorders; enhanced their website to provide more easy to understand information and resources so that patients do not feel confused and isolated; helped people to find their voice and not be ashamed about Lymphedema and other Lymphatic disorders; produced a world-class research journal updating doctors and researchers as to what is happening in lymphatic research; and so much more. LE&RN has done an incredible job of transforming themselves into a more relevant and important organization. They are definitely an organization to watch… they will change the world.

8

Volunteer

Rating: 5

Four years after having surgery to cure cancer in 2004, I discovered I had swelling crawling up my left leg. It began in my toes, and inched up to my thigh over the course of a few years. My doctors were stumped. One even suggested I was just "getting old." In 2011, I discovered my disease has a name -- lymphedema. Finding the Lymphatic Education & Research Network (LE&RN) was just what I needed because up until that point, I didn't know much about lymphedema at all, and I was forced to do my own research. But LE&RN made researching so much easier, with its pages upon pages of information, symposiums and personal stories from people who also suffer from the disease. I was so impressed with them that in 2014, I decided that instead of having a bridal shower, I would hold a LE&RN fundraiser, raising $3,000! My husband and I then spend our honeymoon participating in the Walk for Lymphedema in NYC, a LE&RN fundraiser, and walked over the Brooklyn Bridge with others who also suffer from the disease or care for family members who do. LE&RN is such a great tool for those newly diagnosed with lymphedema, and it's a great resource for all lymphedema patients to find new information and support. Thank you, LE&RN!

7

General Member of the Public

Rating: 5

I was asked to make a donation toward my friend's walkathon account, and it made me take a closer look at the organization she was raising funds for. I was pleasantly surprised to see all the different things this foundation has to offer. My friend has had lymphedema for 15 years, and I know she is always frustrated by how little information is out there. Now, she has a place to not only find out the latest information on lymphedema, but she even has a place to send her doctors and therapist so they can also learn more about her condition.

Review from Guidestar