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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

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Professional with expertise in this field

Rating: 5

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!

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

There are up to 10 million Americans with lymphatic disease. As a lymphedema patient and the facilitator of a lymphedema support group, I see all too often that patients routinely do not get the help they need from their medical professionals. We are often left to figure out our own diagnosis. Lymphatic Education & Research Network is an amazing resource for us. Here we can find the latest research and bring that information to our physicians. Their continuing research is helping find new ways to treat our incurable disease resulting in improved quality of life. Beyond even that, they have designated certain health care facilities nationally and internationally as Centers of Excellence where we can find the care that we need.

Client Served

Rating: 5

I am so thankful for the Lymphatic Education & Research Network. This nonprofit organization truly cares for its members, of which I am proud to say I am one. So often individuals suffering from lymphedema are overlooked by the medical community. LE&RN fights the fight for us, working to pass legislation to provide funding for research into this devastating condition, which leaves its sufferers with physical deformities along with severe psychological residuals. Most of the people I meet have no idea what lymphedema even is. However, because of LE&RN, the public, especially the medical community, is becoming more aware of lymphatic diseases such as lymphedema. I cannot say enough good things about LE&RN!

Professional with expertise in this field

Rating: 5

As a registered dietitian that was asked to start working with people with lymphedema, I found LE&RN to be a trusted source for information. Using their website and resources helped me to understand lymphedema and to find research to read and has allowed me to become an authority within the dietitian community on the subject of nutrition for lymphedema. LE&RN is one of the resources that my co-author and I recommend for our readers. Thank you LE&RN for the work that you do!!!

Professional with expertise in this field

Rating: 5

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

Donor

Rating: 5

After being treated for Cervical Cancer back in 2013 with a radical hysterectomy, 5 weeks of radiation and chemo, the fear of cancer return diminishes but the side effect of secondary lymphedema in my legs is a daily challenge. Upon my initial referral for lymphedema treatment, I brushed off the seriousness and delayed treatment. Although, life was very busy at the time since I was working and raising 3 small children. Once treatment was sought, bandaging and applying medical grade compression caused the reality of living with lymphedema to set in. I did feel I could live with the physical impairment of my particularly large right leg size and would not wear compression every day for the sake of comfort. In July 2017, I suffered my first Cellulitis infection. This 3-night hospital stay was a wakeup call for my lymphedema management.
Upon discovering the Lymphatic Education & Research Network, I found the best sources of education and information available for lymphedema. Even several years ago internet searches didn't provide many results on lymphedema. The video symposiums for LE&RN members are educational and cover so many different aspects of lymphedema. There is much encouragement on Lymphedema treatments, research, and cures because of LE&RN. Hearing Kathy Bates, Spokesperson for LE&RN and her dedication to involvement and finding a Cure brings more attention to this underexposed health matter.
By financially supporting LE&RN, I receive tangible resources and advice on being a lymphedema advocate and patient managing lymphedema daily. Thank you LE&RN for helping me manage this chronic condition with a positive mindset.

Melanie S.6

General Member of the Public

Rating: 5

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.

Professional with expertise in this field

Rating: 5

LE&RN is an excellent resource for my patients with lymphedema and lipedema. They provide high caliber educational videos and conferences for patients and clinicians that are free of charge, initiate and support important research projects to better our understanding of how to treat these conditions, and set the standard for practioners working with these patients.

Professional with expertise in this field

Rating: 5

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.

SharonVogel CLT LMT BCTMB

Professional with expertise in this field

Rating: 5

As a Therapist CLT, LMT, BCTMB, my focus is on knowing evidence based current medical procedures and techniques to help my lymphedema patients and LE&RN provides me with these resources. I am a very happy supporting member and share their website plus resources with each of my patients. Thank you, LE&RN!!

Board Member

Rating: 5

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.

Previous Stories

Board Member

Rating: 5

LE&RN goes beyond simply organizing patient support groups. LE&RN produces top-notch conferences for lymphatic research scientists, lymphatic disease physicians, lymphedema therapists, and patients.
Most importantly, LE&RN has taken a very active role in persuading US legislators to adequately fund lymphatic research, so that cures for lymphedema, lipedema, and other lymphatic-based conditions can be developed.

Donor

Rating: 5

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.

Professional with expertise in this field

Rating: 5

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

Donor

Rating: 5

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

Volunteer

Rating: 5

My son has born with a rare deformity of his lymphatic system. He has been suffering from the effects of it for 14 years. The research and awareness the The Lymphatic and Research Network has done in just a few short years has meant everything to Lane and his family. For many years we had no known diagnosis.We have been able to try different treatments and see Doctors that specialize in Lane's condition that we would not have otherwise known. Lymphatic diseases are debilitating and the medical world is just now starting to understand them and that is mostly due to the work of this non profit.

General Member of the Public

Rating: 5

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

General Member of the Public

Rating: 5

My 11 year old son has KLA, a very rare complex lymphatic anomaly. The LE&RN organization has been there for us for the community as they raise awareness and allow the patient's voice to stand strong and be heard. I am especially grateful as LE&RN works hard to lobby for the creation of a "National Lymphatic Commission" and recognize just how important "lymphatic disease" research is. They are bringing researchers together/collaborating and establishing a registry and repository essential for our researchers and with the goal of accelerating the research and aiming for a cure. While we may be rare, we do have so much in common with respect to the underlying pathways of lymphedema and cancer. Thank you LE&RN for all that you are doing in raising awareness, advocating for us and spreading the word that LYMPHATIC DISEASE is important. #CureOn

TeamBurrows

Volunteer

Rating: 5

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.

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Volunteer

Rating: 5

There are so few medical professionals who are experts in the field of lymphatic diseases. There are no medications and micro-surgery is generally considered experimental by insurance companies. The standard of care, massage therapy and compression garments, is often not covered by insurance companies.
What a godsend the Lymphatic Education & Research Network has been. The website content is an amazing resource for the patient. It is encouraging to know that they are bringing awareness to this condition to the government and medical community as well as funding research.
After participating in the 4th annual Run/Walk to Fight Lymphedema & Lymphatic Disease last year, I decided to become a LE&RN volunteer.

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General Member of the Public

Rating: 5

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.

Donor

Rating: 5

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.

1

Client Served

Rating: 5

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!!

Board Member

Rating: 5

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.

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4

Board Member

Rating: 5

As a board member and a parent of a child with primary lymphedema, LE&RN is THE organization that gives promise and hope to all those suffering with lymphedema and lymphatic diseases. Every day LE&RN is gaining ground in bringing awareness to lymphedema. Through this awareness and the raising of dollars to fund research, LE&RN is making a difference for all those affected by lymphatic diseases.

Client Served

Rating: 5

I owe LE&RN a debt of gratitude as I travel my personal Lymphedema Road. I have learned so much from this organization, without sugarcoating nonsense, the ways to find quality care and superb resources and subsequently the path and confidence to share what I have learned in various outreach methods. One of my ongoing amazements is the extraordinary prompt response whenever I contact them by email, or phone.
Their tireless work, embracing of all those willing to help in the wide breadth of the endeavors they are involved in, in my mind is what makes LE&RN a remarkable nonprofit.

2

Volunteer

Rating: 5

My son Zachary (16) has Lymphatic Malformation and is proud to be their Texas Youth Ambassador. We have been involved with the Lymphatic Education & Research Network since 2015, doing multiple awareness and fundraising campaigns and the support of everyone on the LER&N staff as well as other volunteers has always been OUTSTANDING! Their drive to help people who may not be able to help themselves is unprecedented. Their love and support has been touching and humbling, especially because lymphedema is a main focus, but their willingness to share Zachary's story has been amazing! We are truly grateful for this non-profit organization. We started Zac's Attack for a Cure to help support LE&RN! www.zacsattack.com

Donor

Rating: 5

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.

Professional with expertise in this field

Rating: 5

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

Tiffanydetlefsen

Volunteer

Rating: 5

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!

Previous Stories
2

Client Served

Rating: 5

My only hope for a cure is Lymphatic Education & Research Network. They are going to change my future
~Emma Detlefsen
Youth Ambassador

Volunteer

Rating: 5

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!

Volunteer

Rating: 5

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

General Member of the Public

Rating: 5

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

Barbara H.2

Volunteer

Rating: 5

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.

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1

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.

Mo B.

General Member of the Public

Rating: 5

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!

Sarah B.11

Volunteer

Rating: 5

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.

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1

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.

Maureen S.5

Client Served

Rating: 5

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.

Tara F.1

Professional with expertise in this field

Rating: 5

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

Client Served

Rating: 5

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.

Volunteer

Rating: 5

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.

1 Diane L.7

General Member of the Public

Rating: 5

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

1

Professional with expertise in this field

Rating: 5

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

1

Client Served

Rating: 5

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

1

Advisor

Rating: 5

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

1

Professional with expertise in this field

Rating: 5

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

1 lisaann1212

Donor

Rating: 5

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.

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3

Volunteer

Rating: 5

This group helped me uncover what disease I truly had after years of misdiagnoses. Without the resources this group makes available, I may still be searching for answers.

1

Volunteer

Rating: 5

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.

Previous Stories
3

Volunteer

Rating: 5

LE&RN is our saving grace. They are the hope in this grim diagnosis. Advocacy, research and ultimately a cure while providing support-this is LE&RN. They give us strength to, in her words, "kick lymphedema's butt"

1 Jessica F.6

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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!

1

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

1 Jeni V.

General Member of the Public

Rating: 5

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

1

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!

2

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!

1

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.

2

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.

Previous Stories
3

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
2

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.

Read more

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

2 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.

3

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.