Lymphatic Education & Research Network

In the last two years, LE&RN's efforts have led to $12 million in lymphatic research funding through the Peer Review Medical Research Program and they are now awarding up to $100k in direct grants to young researchers and to mid-career lymphatic researchers along with overseeing 70 LE&RN Centers of Excellence in Lymphatic Disease treatment in 20 countries and expanding their patient registry which is so needed by researchers. I applaud LE&RN's global impact and their dedicated staff that is changing the field. Thank you.

According to financial filings (publicly available), LE&RN CEO total compensation in 2023 was over $320,000 while the organization paid $73,000 in consulting fees to this CEO’s spouse, for a stunning total of $393,000 to this one couple. This represents more than a quarter of the org’s total revenue of just under $1.5 million. Nearly a quarter of all money spent by this organization in 2023 ($1.7 million) went to the CEO and his spouse.

Many years ago, LE&RN eliminated funding for Postdoctoral Fellowships, which directly funded research. At the same time, CEO pay continued its upward path, while they instituted a generous consulting fee for his spouse.

I have no faith in a non-profit board that would approve this excessive CEO pay and this consulting arrangement with his spouse, and I cannot trust their overall judgment on any matter. As a former donor and supporter, I expect better stewardship.

As a dedicated researcher and on behalf of my esteemed team, we want to express our enormous gratitude to the Lymphatic Education & Research Network (LE&RN) for their invaluable support throughout our research endeavors. As one of the leading world organizations, LE&RN has demonstrated a commitment not only to aiding patients and their families but also in fostering a sense of unity among professionals and researchers who share a deep passion for understanding and addressing lymphatic diseases. LE&RN's efforts to raise awareness about lymphatic diseases and advocate for improved treatments have had a profound impact on enhancing the quality of life for those affected by these conditions. Their commitment to education has not only empowered healthcare professionals but also increased public understanding of lymphatic diseases, ultimately improving the lives of countless individuals. LE&RN’s dedication to advancing awareness, advocacy, education, treatment, and research on lymphatic diseases is truly commendable. We cannot overstate the tremendous impact that the LE&RN has had on our research and the wider community dedicated to lymphedema. Their unwavering support and dedication have been instrumental in propelling our work forward, and we look forward to continuing our collaboration with LE&RN to advance our collective mission of improving the lives of those affected by lymphatic diseases.

As a health educator, I've witnessed firsthand the profound impact of the Lymphatic Education & Research Network (LE&RN). Their commitment to disseminating accurate information and fostering a supportive community has significantly enhanced the understanding of lymphatic health among both professionals and patients. Their advocacy efforts and dedication to promoting research are instrumental in driving positive change within the field. LE&RN is an invaluable resource for anyone seeking reliable information and support in the realm of lymphatic health.

In the last year, LE&RN's team secured lymphatic diseases as eligible for the Dept. of Defense's $370M research program and managed to get a lymphatic project at the new ARPA-H agency that could yield up to $200M in lymphatic research in the next 3-5 years. They sponsored the LymphaticForum conference for 200 researchers and provided 23 scholarships and awards so young investigators could attend. Their efforts led to the establishing of the National Lymphatic Commission at NIH, and they were awarded the first-ever CDC Chronic Disease Awareness Grant for cancer-related lymphedema. Finally, having created a Centers of Excellence program and standards to guarantee that people with lymphatic diseases get state-of-the-art care, they now have over 60 Centers worldwide, including Harvard Medical School Hospitals, Stanford, Johns Hopkins, Cleveland Clinic, Cedars-Sinai, MD Anderson Cancer Center, University of Chicago, and Memorial Sloan Kettering. They continue to grow their International Patient registry to guarantee that researchers have the database they need for their research. Congratulations to the team at LE&RN that gave us World Lymphedema Day and is transforming the field of lymphatic research and patient care.

LE&RN is essential to the future of lymphatic education - my experience in working with them to advocate in our community has been excellent!

This org recently posted a solicitation on social media, asking people to leave the org money in their wills, saying “Medical research is expensive and takes time.” A question was asked there as to what research they are funding. No reply. On their website, when they talk about research, they point to a postdoctoral fellowship program. On their About page, this program is all that is mentioned in regards to research impact. But that program, according to their website, has not been funded since 2016.

So how does the Lymphatic Education & Research Network spend donor money? According to information freely available on ProPublica Non-Profit Explorer, much of it goes to CEO pay. In 2022, of about one and a half million dollars spent, $260,000 (not including over $50K in ‘other’ pay) went to the CEO. In 2021, 23.6% of every dollar spent was spent on CEO pay; in 2020 it was 29.5%. In 2021 and 2020, the CEO was paid more than all other "other salaries and wages" combined.

Back to the question raised by their post: what research are they funding that is “expensive and takes time”? What is costing them money in regards to research funding? There is no information about research funded by them on their website other than this seemingly now-defunct program. CEO pay in dollars and as a percent of what they spend in total is available to the public at https://projects.propublica.org/nonprofits. I for one am not on board with funding an organization, in my will or otherwise, where such a large proportion of all money spent goes to one highly compensated employee.

No one cares for or fights for individuals with lymphedema more than the Lymphatic Education & Research Network. I have had lymphedema since 2008 following cancer surgery. Because of the hard work of this outstanding organization, I have seen a vast improvement in the research into this uncurable condition and other great achievements because of LE&RN. I am proud to be a member of LE&RN. Absolutely the best!

We are grateful for the support and dedication of everyone that is involved in the Lymphatic Education and Research Network!

Highly recommend this group! They share amazing resources and information for lymphedema and lipedema! Big advocates for us, and we are so grateful for all the do.

LE&RN has advanced awareness of lymphatic diseases and increased care through their Centers of Excellence. They are awesome!

LE&RN has increased awareness of lymphatic disorders in a way that no other organization has been able to do. It has set standards for care that have been of tremendous value to both patients and providers.

LE&RN has helped me tremendously; along with education, they also gave me a scholarship to get my certification in lymphedema treatment. Now I’m able to practice in the field and help many clients who are in need . I couldn’t have done it without LE&RN.

LE&RN has been a reliable source in trying to navigate through confusing information online. Lymphedema has been a devastating condition for myself and others and their advocacy for treatment is invaluable.

I was diagnosed with post-surgical lympedema two years ago. My surgeon knew next to nothing about it and was no help. Although she referred me to a lymphedema therapy center in Las Vegas, she declined the pump that would have made a huge difference. Through my own research, I found LERN, and studied all they had to offer; the names of doctors and therapists all over the country, literature, websites, and videos. All these things gave me SO MUCH more help than that horrible surgeon ever even thought about giving. Giving to LERN is a joy, since as things stand now, lymphedema is a progressive and incurable disease. I give in the hope that those things will change.

I have been involved with LE&RN for 7 years. This truly generous nonprofit has gifted me and so many others with incredible information, access to new and vital research, symposiums and the opportunity to be involved in a state local Chapter. They have always been inordinately responsive to questions and comments. Their pursuit to broaden access to lymphedema knowledge is profound.

Navigating the Lymphedema world can be absolutely overwhelming, without LE&RN and their resources, I do not think I would have found the top medical talent to help me manage this disease.

The strides LE&RN has made in the past years is nothing short of remarkable.

Thank you!

I have secondary lymphedema in my left/dominant arm as a result of breast cancer surgery. LE&RN provides immense resources to members who want to do independent research as well as free or reduced fee forums with leading edge researchers/practitioners. Their successful efforts to get the medical community to
recognize lymphedema as a chronic disease and the federal government to fund research will hopefully lead to new treatments for patients like me. LE&RN is definitely included in my estate plan.

I have been amazed at all I have learned and the communications
I have received from Lymphatic Education and Research Network!
I highly respect and appreciate all they do for those that suffer from these diseases!

It's always challenging to select a label for myself from the drop-down menu when joining an organization or registering for a conference related to lymphedema. For example, when choosing my role for this review, should I have chosen "a client served," "a donor," or "a professional with expertise in the field"? I can claim all of those roles, and more, as an expert nurse educator who grew up with primary lymphedema and then completed a doctoral dissertation about that very experience. For this review, I flipped a coin and chose "a client served." Regardless of the role I choose with which to label myself when engaging with the Lymphatic Education & Research Network (LE&RN), the organization meets my informational needs and does so in a way that feels equitable without the power differentials between medical professionals and their clients typically evident in society. For example, when participating in a LE&RN online conference organized for physicians and patients in 2020, physician presenters answered my questions directly, with depth and detail, and at a level commensurate with my questions. As stated in the organization's mission, LE&RN is effectively "bringing patients and professionals together" in common spaces.

LE&RN works for systemic change in the research allocations coming out of our primary health organizations, the National Institutes of Health and the American Medical Association. So, in addition to funding research directly, they are advocating--effectively!--for more research support (dollars and published studies). Also, through LE&RN's patient story area, I found a woman with lower limb lymphedema, like me, who is a personal trainer/fitness coach. I have begun working with her online and am excited to have her support in fine-tuning my practice, my diet, my exercise and my self-care to better tend to my body, mind and spirit.

As a hospital based lymphedema & oncology rehabilitation therapist I have often used the excellent articles as a valuable resource in helping my patients with their recovery. There has not been any other resource like Lymphatic Education & Research Network that supports the lymphatic community! Before LE&RN it was like a 'lymphatic desert'. I am thankful for LE&RN and hope that it continues to be there for all of us!

This nonprofit brings guidance to an under recognized condition. I wish I had had some of the resources they provide as I helped my daughter through her diagnosis. Even doctors often don’t offer the knowledge provided by this group. Please support them so they can get more funding to pursue better diagnosis, treatment and ultimately the cure we so desperately hope for.

I am a massage therapist as well as a Lymphatic therapist in the Tucson Arizona area. I work post surgical, cancer, and lymphatic disease. I rely and LER&N to educate and reassure my clients via YouTube and LER&N website. I am constantly reading and learning from other patients on social media as well as the doctors and therapists on LER&N

I knew so little about leg lymphedema that I have suffered with for 30 years. This organization has provided me with a wealth of knowledge to help improve my quality of life. In addition learning about legislation and other avenues with which I can get involved.

As a lymphatic and massage therapist LE&RN is a valuable resource to stay current on the newest research with open access to articles and symposiums.

The leadership and staff of LE&RN are truly committed to improving lives of lymphatic disease patients. LE&RN recognizes that fundraising and patient support groups are important, but to make lasting change, research and medical care/insurance infrastructure must advance. The leadership of LE&RN have implemented specific steps that must be taken to 1) increase the numbers of people who understand what lymphatic disease includes, 2) increase exposure of medical students to important lymphatics basic science and physiology, and 3) deliberately and effectively present evidence to medical insurers and research funding entities to advocate for better lymphatic disease support and research.

The Lymphatic Education & Research Network (LE&RN) has lead the charge to advance education and research for patients suffering or at risk of lymphedema, a chronic condition that often times is overlooked by clinicians. Through the work that LE&RN has accomplished, we are more confident that this disease state will continue to get attention and support within the healthcare community, through public policy, and patient education.

Hello, my name is Lela Giorgobiani, doctor from Georgia ������������ first of all thank you for your great activities and care for patients. I am learning from you how to talk about the lymphedema and how to improve medical knowledge of doctors or patients education. I got lower legs lymphedema after hysterectomy and lymph dissection with followed brachytherapy. It was really hard to have such problem in country where is impossible to find the lymphedema center, doesn’t exist at all! Now we are on the way to establish first lymphedema center, trying to find sponsors to get compression garments for adequate price, will be ready to become a site of some trials, printed flyers, brochures, the guideline is already approved, next is the textbook about lymphatic system....You helped me to find the right way, thanks again to make me stronger! Wish you all the best, Lela

Excellent organization. Totally focused on today's patient and forward looking for the advancements that could be with the right efforts and funding..

Through LER&N I’ve found the information and direction necessary to make choices about my own treatment. It is the place I always begin when looking for help. The resources there are constantly expanding and offer new approaches and connections. I am a patient with Primary lymphedema for the past seven years. I just had LVA at Kaiser San Jose which is a surgery that I learned about through the the helpful pages on LER&N ‘s website.

Donna PIller

The Lymphatic Education & Research Network provides a vast amount of educational material that is so important for patients, since very few medical professionals in the US specialize in lymphedema and lymphatic diseases. LE&RN also is active in working at improving insurance coverage for treatment and compression supplies for lymphedema patients.
I have been a volunteer with the CA Chapter of LE&RN for two years now. With the current Covid pandemic, the services LE&RN provides are more important than ever.

I have Primary Lymphedema but was only diagnosed in my mid-30s. There is a general lack of awareness to this disease. Had I known sooner I may have had a better outcome. General Practioners know nothing about it's affect on your body or other organs and what you should do to alleviate some of the issues. Most GPs recommend compression stockings - but that is merely one small thing you can do. I fear that my lymphedema is spread out throughout my body. This is a progressive disease that requires multiple forms of DAILY regimes - proper skin care - massage - compression - proper nutrition - water intake - fat-free, carb-free, salt-free diet. This disease is not for the faint of heart. There are ups and downs - and life is just not easy with such a disease. AWARENESS IS A MUST - SO THAT THOSE WITH THE DISEASE MIGHT GET THE ATTENTION THEY DESERVE - AND FOR THOSE WHO ARE MAYBE NOT AWARE THAT THEY EVEN HAVE IT.

In a world where even medical professionals often know little about lymphedema, Lymphatic Education & Research Network is the beacon that shines with hope for those who have the disorder and those who are treating them. It's a source of trustworthy and cutting edge information, as well as a funding source for research in the field. LE&RN has taken the lead to establish standards for lymphedema care internationally. Those of us with lymphedema owe so much to this organization. I know the money they receive WILL make a difference.

This non-profit is assisting, teaching, advocating for a terribly misunderstood population of people with lymphatic diseases. They carry out webinars for people affected as well as for healthcare professionals who have been historically undereducated about the lymphatic system and diseases of this system. Additionally they support an "Ask the Expert" on their website with a number of highly regarded health professionals who promptly answer peoples' questions on a varied number of topics related to lymphatic diseases. They support and are present at fund raising events across the US and have built an international network dedicated to advocacy, teaching and research related to people and lymphatic diseases and supporting and teaching healthcare professionals and researchers alike. They have so incredibly and impressively reached US congress and senators in many states to advocate for care and supplies to be mandated to be covered by health insurance, because so very many people in the US have no assistance to manage their lifelong lymphatic disease. As a healthcare professional who has developed a lifelong lymphatic disease after treatment for cancer and who has accessed the LE&RN for my own personal assistance, I would greatly recommend this non-profit to be recognized as a "great non-profit". They provide absolutely outstanding support of a highly under-represented population of people who truly need this assistance that they cannot get elsewhere at this time, and have created a sustainable organization that provides research awards and continued teaching for healthcare providers as well. Bravo LE&RN!!

When our 5 year old son was diagnosed with Primary Lymphedema in 2002, we struggled finding information on the disease. It took over a year to even get a diagnosis. LE&RN was the one place we found that could educate us on the disease so we could then help educate his doctors and others. LE&RN has been the leader in helping to fund research for lymphatics, bringing awareness and a huge source of support for those affected with lymphatic diseases.

This is an extraordinary organisation. The impact they have had on both research and government policy for lymphoedema is remarkable. Truly remarkable. They have raised awareness not just at a local level - helping thousands of families cope with lymphoedema and getting access to vital resources and support - but also at a national and government policy level to shape funding for lymphoedema.
This is an organisation that truly cares, and punches way, way above its weight.
A huge thank you to LE&RN for all they have done for my family and thousands of others around the US and the world.

Truly caring organization that provides valuable support and advocacy for the Lymphedema community.

When your child gets diagnosed with lymphedema there are more questions than answers and very few places to turn to for guidance. LE&RN has been our saving grace in understanding our daughters lymphatic disease and has given us our drive to keep fighting for a cure. They are continuously creating change and advancements for lymphatic disease on all fronts-advocacy, education, and research. They are our hope for a better future for our little girl. Thank you LE&RN!

LE&RN is always helpful and able to keep patients up to date with information. Whether you call or email, they are always glad to help and willing to go the extra mile!

Through LE&RN I'm able to advocate for research to hopefully one day find a cure for this disease.

They have given me great research. They have been there for me when i wanted to tell my story.

Having found LE&RN has been very helpful in many ways. Through edcation, spreading awareness, finding others to connect with and research this non-profit has done and continues to help serve the millions who suffer with lymphatic disease.

I have been afflicted with lymphedema for several years. The insight, education and testimonials are reassuring. I know I am not alone. Keep up the good work!

I'm a volunteer with the California chapter and I've seen this nonprofit play a pivotal role and spreading awareness about this disease and how people can treat it and live with it.

LE&RN helps patients, medical personnel, congress & anyone else who needs info about lymphedema. This condition ruins lives & very little is available to improve the life of someone who has acquired this condition, often as a result of cancer treatment.

Appreciative of the outreach and education efforts made by LE&RN on behalf of my patients

As a retired veteran having to deal with lymphedema, I had tried every veteran service organization (VSO) I could with no resolve or help. I then located LERN and the organization has saved my life. I believe in the organizations devotion to its members and its resolve to find cure. My wife and son have become involved and we consider LERN as an extended family.

LE&RN changed my life. That simple. It brings together a group of people who had no hope, no cure. But now, I feel like we are fighting together to bring awareness and not feel so alone and islotated.

The education and research done by Lymphedema Education and Research is amazing for those of us with Lymphedema!

Fantastic group to work with. They are doing great things to spread awareness of lymphedema. - American Society of Breast Surgeons Foundation

My pt therapists are so knowledgeable. They receive great training and think outside of the box to get my legs under control.

LE&RN helps to put my disease on the map in a world that is still shockingly unaware. In the US 10M people suffer from lymphedema, most of them like me, as a result of surviving cancer. Imagine the irony that so much attention is directed at saving lives and then so little is done to make life worth living. Lymphedema is not a rare disease although it can feel awfully lonely out there. It is through LE&RN that all of us can know better. There is a great deal of awareness work to be done on all levels and around the world. Please support LE&RN and pay it forward. Signed M. Driessen

This non profit does an excellent job in advocating lymphedema worldwide.

LE&RN Had the information I needed to realize I had Lymphedema. They were my starting point so I could tell my doctors what I needed because my doctors were clueless.

LE&RN is the only hope for a cure for our 10 year old, born with primary Lymphedema. You will not find a more dedicated organization in the world of Lymphatic Disease.

LE&RN was crucial in the discovery of my diagnosis of Lymphedema and then in gathering information for the management of it. The research and resources from this organization are imperative to those of us living with Lymphedema.

LE&RN has made a tremendous difference in my life. Not only is it the single best resource for information and research about Lymphedema, but it has connected me with many others who suffer from this disease. Thank you!

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

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!

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!

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.

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.

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.

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.

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!

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.

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.

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.

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.

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

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!

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!

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..

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.

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.

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

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!

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!!

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

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.

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.

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!!

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.

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.

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!

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.

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!

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.

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!

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.

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!

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.