NATIONAL LYMPHEDEMA NETWORK INC

The NLN's programs include patient support services; education and awareness; advocacy and training; and collaboration. Patient support services include an online resource database to help patients find therapists and clinics; the NLN Patient Support Group Network; the Marilyn Westbrook Garment Fund to assist low-income patients obtain essential compression garments not otherwise available through insurance; an active TeamInspire blog for patients to interact; and the Lymphedema Ambassadors program engaged in outreach and external relations. Education and awareness programs include cited position papers developed by the NLN Medical Advisory Committee; a quarterly journal, LymphLink, dedicated to specific topics, e.g., obesity, surgery, financial implications of lymphedema, along with a resource guide, questions and answers column, and news; regular social media posts, including an online newsletter, lymph eChannel; and an education kit, developed for breast cancer nurses and cancer centers, including a series of videos about lymphedema and its treatment posted also via YouTube.

Since 1994, the NLN has recognized inspiring patients, caregivers, and therapists with its annual Lymphedema Awareness Day Award, given during the month of March, Lymphedema Awareness Month. The international conference brings together therapists, clinicians, and prominent scholars in the field to share new information and treatment developments. Most recently, a patient summit was offered in conjunction with the conference, with participation far exceeding anticipated levels.

Within IRS guidelines, the NLN supports legislative efforts on behalf of lymphedema patients, including the Lymphedema Advocacy Group's work toward passage of the Lymphedema Treatment Act to provide a Medicare benefit category for coverage of medically prescribed compression garments and supplies. The NLN collaborates with other organizations, regionally, nationally, and internationally, to support collective efforts to further awareness and share resources. In 2015, House Minority Leader Nancy Pelosi invited NLN to participate in the Women's Health Month roundtable discussion. The NLN works cooperatively with the Lymphology Association of North America (LANA) to encourage training and certification of therapists, who play an essential role in treating patients. Through the NLN International Affiliates, like-minded organizations around the world are connected.

The NLN actively collaborates with the National Organization for Rare Disorders, including participation at the Rare Disease Day Awareness event in California's state capital and the West Coast Legislative Conference, organized by the EveryLife Foundation at the University of California, San Francisco, Medical Center. In addition, the NLN shares resources and services to the field with the Lymphedema Advocacy Group and Fat Disorders Research Society. In addition to its collaborations above, the NLN is affiliated with the Alliance of Wound Care Stakeholders, Global Gene Rare Foundation Alliance, and the Patient Access Network Foundation.

With a modest budget and small staff, the NLN accomplishes much on behalf of a seriously overlooked patient population and the caregivers, therapists, and clinicians who serve it. With an active, working board of directors, volunteer committees, and both non-cash and sponsorship support from industry, the NLN makes every dollar stretch.