Thank you to the NLN for helping to educate both patients with lymphedema and lymphedema therapists. Your dedication and commitment in providing accurate and evidenced based information to the lymphedema community is outstanding.
Those of us who find ourselves wandering in the Dark Woods of Lymphedema, frequently alone and frustrated, need to reach out to one another and work together to bring this under-researched, frequently unrecognized, body of medicine into the light, and promote the advancement of research related to all things lymphatic.
Towards that end, the NLN serves as a touchstone for the broad lymphedema community.
As a nonprofit professional who has worked with many health focused organizations, I am impressed by the very unique role the NLN plays to bring together a broad and diverse landscape of lymphedema stakeholders that includes patients, therapists, clinicians, researchers, industry partners, and advocates.
I am so grateful that I stumbled upon the 2015 World Congress on Lymphology, cohosted by the NLN in San Francisco last year, and was able to attend the Patient Summit. Not only were the presentations by leading lymphatic scholars and clinicians informative and personally very helpful to me as someone with lymphedema, I was inspired by the NLN's leadership, and its many collaborative partners, who work tirelessly to bring lymphedema and lymphatic science from out the shadows into the light, as well as advocate for patient access to affordable care and treatment of a very serious chronic condition.
I also attended the 2016 NLN conference in Dallas as a patient advocate, where some of the world's leading lymphatic researchers presented on cutting edge discoveries and advances in lymphatic science. Clinicians and practitioners from around the globe shared findings on their work with lymphedema patients. Because lymphedema, and lymphatic science in general, are underfunded areas of research, the NLN conferences (as well as its other resources and publications) play an increasingly valuable role in advancing the field of lymphology and building a body of evidence-based best practice for diagnosing and treating lymphedema patients. For patients, the NLN's resources and publications help inform us on the art and practice of diligent self-care and compression.
For all of the above reasons, I've been volunteering with the NLN for several months, and am honored and excited to be a part of this extremely valuable organization.
After seeing this organization flaunt their status as a “top charity” on this site via social media, I had to take a look for myself. Too many of their “reviews” from someone directly affiliated with NLN—including the new self-appointed Executive Director (posing as a “client served” without disclosing her position in, and compensation from, NLN) board/committee members.
The fact that the majority of these reviews popped up in the same two-day span makes it clear that this is another attempt to save face after finally ousting the previous inept Founder/ED. I am giving NLN two stars solely for its garment fund program, which seems to be the only program they actually have that helps patients, and its early presence as one of the only sources of lymphedema information.
Their “magazine,” which I used to pass on to my patients, as it contained helpful stories from patients and therapists, has become an erratically scheduled mess of disjointed content. I have also heard from patients (both my own and those of my colleagues) that their toll-free info hotline is never answered and messages are not returned. In trying to register for their recent conference (which have also gone downhill in the last few years—I’ve been attending since 2004), I experienced the same thing. When I did finally speak with someone weeks later, I was told my time zone was to blame (I’m in the Midwest)—really?! In all fairness, I do know of one person who got through, only to have the voice on the other end of the line be completely uninformed about lymphedema—heck, the person couldn’t even PRONOUNCE lymphedema!
I’m embarrassed to have referred so many patients and colleagues to this organization for information and resources. Shame on you, NLN, for manufacturing your own reviews and ratings. A non-profit’s resources and programs should speak for themselves. I will no longer recommend becoming a member of this organization to patients and other CLTs.
The National Lymphedema Network provides much needed information about lymphedema and lipedema. These two conditions are not well understood by the medical community and are, therefore, more often than not, misdiagnosed. The NLN provides accurate, informed, and pertinent information for patients, family, and friends of those who are living with these conditions. In addition to an informative and easy to navigate web site, the quarterly hard copy of LymphLink provides up-to-date information on new research and products. The NLN is a great and friendly resource for patients as well as clinicians.
I've been a member of NLN during most of my nineteen year experience with lymphedema following breast cancer treatment - not being sure of exactly when I became aware of NLN, I'd guess at least fifteen years of membership.
I've been to three of the NLN conferences, 1st Orlando conference, Reno, and Dallas in 2016. I became an LSAP member in Reno, learned about advocacy and have been a very active advocate including leading the Florida group for the Lymphedema Treatment Act.
I've watched NLN grow to become an international leader in the field, and bring hope and education to millions of patients. I encourage every breast cancer, actually, every cancer patient I meet to join NLN and learn about lymphedema.
The support I've received with questions, worries, information has been great. The leadership outstanding. The inclusiveness without question.
I am a big fan of NLN. It turned me into a support group leader, a public speaker, a congressional advocate, and non-stop talker about lymphedema.
After learning I had Lymphedema in my arm and trunk following breast cancer treatment I turned to the Internet to learn more about it and the best treatment. I found the National Lymphedema Network to be by far the most valuable resource of information. I joined and have since become an LSAP patient at NLN conferences. My CLT-LANA has used the Marilyn Westbrook Garment Fund for patients unable to afford garments. I recommend membership to anyone I meet diagnosed with Lymphedema.
My first experience with the NLN was as a patient many years ago. I found their directory of qualified therapists and professionals to be very helpful, not only for myself but in helping other patients locate services in their area. In 2014 I was selected to participate in the LSAP (Lymph Science Advocacy Program) at their national conference. The NLN provides many great resources that empower patients to be active participants in their care which in turns allows us to better manage this life long condition. Most beneficial to patients is the garment fund that provides compression to patients with financial need. Since Medicare and most insurance do not cover this vital component of lymphedema treatment, this program can be a life saver for patients. I was so impressed with NLN as an organization I have recently joined the board so I can be a part of assisting others.
As an experienced therapist of 18 years, I have relied on the information and research provided by the NLN to remain current in my practice. The NLN sponsors an invaluable conference every two years to provide cutting edge research and education for attending therapists, physicians, and patients alike. Their reach is far in terms of providing support for indigent patients, advocacy efforts, and robust presentation of current information via publication, social media, and conference presentation.
I am the mother of a little boy who was born with primary lymphedema. We had a difficult time getting a proper diagnosis. The National Lymphedema Network was, and continues to be, an invaluable source of information and support for our family!
I am a professional full-time lymphedema therapist, certified by rigorous examination from the Lymphology Association of North America, as a CLT-LANA after completion of a lengthy training course and 254 years of practice. I also teach for the Dr Vodder School International part time. In all my interactions with groups and associations and practices, no organization of any kind has come close to performing the exceptional services that the NLN performs for the lymphedema community, both patients and care-givers.
Just look over the offerings. The fabulous color quarterly magazine; the medical;y validated educational materials; the online listings of service providers including clinics and practices; the garment fund; the phone support; the bookstore with valuable books on lymphedema care; the educational conferences; and so much more.
For a well-run non-profit, look no further than the NLN! Contact me if you have any questions. I am on the internet. Gay Lee Gulbrandson, CLT-LANA.
When I first found the term "lymphedema," I was absolutely desperate for information. It took years of inquiry to figure out that the increased swelling in my legs had a medical name. When I found the National Lymphedema Network, I found quality resources based on decades of aggregated knowledge. I also found a therapist who has been an absolute godsend.
I'm now a patient member. The publications, communications, and meetings keep me informed and up to date with new developments.
Thank you.
The NLN is a truly great organization that is looking to help the lymphedema community whether you are a patient, clinician or anyone else. I enjoy being a part of it and contributing to the well-being of others as well as helping the organization grow and increase its ability to help and support others.
There is an opportunity to learn about the latest science in the quarterly LymphLink newsletter or attend the conferences to learn and interact with others. There is an opportunity to participate through committee work for those that want to be very involved or just share your ideas.
The NLN is also a great resource to turn to if you are looking for a certified lymphedema therapists or where to go for training if you want to become one. What a great resource the NLN is for all.
Lymphedema is a tricky condition that is little understood by much of the general population as well as the medical community. As a patient and a therapist in this realm, I am always grateful for excellent education on the subject, and I get that from this organization. From the publication of research papers, to position papers that help guide treatment standards, to creating community for providers, advocates, patients and caregivers, the National Lymphedema Network is one of my favorite groups and I am a happy participant at the conferences every other year.