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Lymphedema

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Lymphedema refers to swelling that generally occurs in the arms and/or legs. Lymphedema results from a blockage in the lymphatic system, most commonly caused by the removal of or damage to lymph nodes as a part of cancer treatment. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling.


 

Lymphatic Education & Research Network

Contact: 516-625-9675
Population Served:

Patients, caregivers, health professionals worldwide

Mission

To fight lymphatic diseases and lymphedema through education, research, and advocacy.

  • Provides disease, treatment and clinical trial information; patient registry; educational programs, newsletters and journal
  • Advocates for lymphatic disease research and sponsors research grants and awards
  • Has chapters in the US and abroad.

National Lymphedema Network

Contact: 800-541-3259 or 510-809-1660
Population Served:

Patients, health professionals worldwide

Mission

To create awareness of lymphedema through education, and to promote and support the availability of quality medical treatment for all individuals at risk for or affected by lymphedema.

  • Provides referrals to lymphedema treatment centers, health professionals, training programs, suppliers, support groups, pen pals/net pals, clinical trials
  • Offers financial aid for compression garments to eligible patients
  • Offers quarterly newsletter, online resource guide, educational materials for patients and health professionals
  • Supports research into the causes of lymphedema and possible alternative treatments
  • Biennial international conference for health professionals.

Patient Advocate Foundation (PAF)

Contact: 800-532-5274
Population Served:

People in the U.S. with chronic, life-threatening and debilitating illnesses

Mission

To provide professional case management services to Americans with chronic, life threatening and debilitating illnesses.

  • PAF Case Managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis; may also be assisted by doctors and healthcare attorneys. PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
  • Offers PAF authored publications and content, distributes booklets and publications
  • Offers an annual scholarship program for survivors
  • PAF Co-Pay Relief Program provides direct financial assistance to insured patients who meet certain qualifications to help them pay for the prescriptions and/or treatments they need. This assistance helps patients afford the out-of-pocket costs for these items that their insurance companies require. For details, call 866-512-3861.