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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.

Aplastic Anemia & MDS International Foundation
Contact: 800-747-2820
Population served: Patients with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases and their families

Mission: To support patients and families worldwide living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases

Resources include:

  • Free educational materials, the latest medical and treatment information, and clinical trials information
  • Online Learning Center, with webcasts, interviews with experts, interactive learning modules, live webinars
  • Guidance for living well with bone marrow failure diseases
  • Support Connection enabling patients to talk with trained patient volunteers who share treatment experiences and provide emotional support
  • Communities of Hope: Volunteer-led local groups connecting patient and families for peer support and information exchange
  • Matthew Debono Memorial Scholarship Fund for students who are U.S. residents age 35 and under, diagnosed with a rare bone marrow failure disease (aplastic anemia, MDS or PNH) and who meet all other eligibility guidelines.

Fanconi Anemia Research Fund
Contact: 888-326-2664
Population served: Patients and families affected by Fanconi anemia

Mission: To find effective treatments and a cure for Fanconi anemia (FA) and to provide education and support services to affected families worldwide.

  • Provides information on disease and treatment, including fact sheets and newsletter
  • Offers information on clinical trials and testing centers internationally
  • Manages online support groups and an international family support network
  • Offers informational meetings and support services
  • Sponsors research grants
last updated on Tuesday, March 25, 2014
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