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More to Explore - Information About Blood Cancers for Patients, Families and Healthcare Professionals

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Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please email thedirectory@lls.org. Because we want to be sure that our visitors find the most relevant resources, we encourage you to visit the organization's website for more detailed information.

Lymphatic Research Foundation
Contact: 516-625-9675
Population served: Patients with lymphedema and lymphatic diseases, as well as medical professionals studying these diseases

Mission: To advance research of the lymphatic system and to find the cause of and cure for lymphatic diseases, lymphedema, and related disorders; to increase public and private funding for lymphatic research and to increase public awareness.

  • Funds research into lymphatic diseases through research fellowships and a funded chair at Stanford University
  • Launched a tissue bank and patient registry for research purposes
  • Publishes a peer-reviewed journal, Lymphatic Research and Biology
  • Hosts medical symposiums for patients and health professionals.

National Lymphedema Network 
Contact: 800-541-3259
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
Other language(s): Spanish, translation services available by phone

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.
last updated on Monday, May 12, 2014
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