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Myelodysplastic Syndromes

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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.

American Cancer Society (ACS)
Contact: 800-227-2345
Population served: People affected by a cancer internationally; programs and services offered to patients and caregivers residing in the United States
Other language(s): Spanish, Chinese, Korean, Vietnamese

Mission: In the U.S., ACS is a community-based voluntary health organization dedicated to eliminating cancer as a major health problem.

  • Provides education materials both online and in print about cancer, including blood cancers, as well as related information such as diet, exercise, complementary and alternative medicine, and disease statistics
  • Offers support services via online discussion boards and in-person support groups through local chapters
  • Road to Recovery, a program offered locally by some chapters, has volunteer drivers who transport patients to and from treatment appointments
  • Look Good, Feel Better program for female adults and teens helps with self-image during chemotherapy and radiation treatments
  • Cancer Survivors Network, a global online community, transcends geographic boundaries and builds bonds among cancer survivors and caregivers through shared experiences and feelings.
  • American Cancer Society's Wig Bank provides free wigs from limited supply to needy patients suffering hair loss due to cancer treatment. Intended for those with insufficient insurance coverage for wigs. For more details, click here.
  • Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges. For more details, click here

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.

MPN Advocacy and Education International
Contact: 517-899-6889
Population served: Patients with myeloproliferative neoplasms (Essential Thrombocythemia, Idiopathic Myelofibrosis, Polycythemia Vera), caregivers, professionals worldwide

Mission: To provide the knowledge, support, and resources patients will need as they adjust to living with an MPN.

  • Offers disease, treatment and clinical trial information, educational programs, webcasts
  • Website lists online and in-person support groups worldwide
  • Provides outreach to the entire MPN community to grow awareness, understanding, and a better quality of life for MPN patients.

MPN Education Foundation
Contact:
480-443-1975
Population served: Patients, caregivers, health professionals worldwide

Mission: To bring education, information and emotional support to MPN patients; to increase awareness amongst patients, physicians and caregivers of myeloproliferative neoplasms.

  • Serves patients with Chronic Myeloid Leukemia, Essential Thrombocythemia, Myelofibrosis, Polycythemia Vera and associated disorders
  • Provides disease, treatment and clinical trial information
  • Offers MPN-NET, an online support group, as well as face to face support groups
  • Offers conferences, newsletters and online videos 
  • Provides referrals to specialists and links to medical literature.

National Cancer Institute's Cancer Information Service
Contact: 800-422-6237
Population served: People with cancer and their caregivers in the U.S.
Other language(s): Spanish

Mission: To provide accurate, up-to-date, and reliable information on cancer that is easy to understand; this confidential service is a federally funded cancer education program.

  • Offers trained information specialists who can answer cancer-related questions on a range of cancer topics, including the most recent advances in cancer treatment.

The Myelodysplastic Syndromes (MDS) Foundation, Inc.
Contact: 800-637-0839 or 609-298-1035
Population served: Patients with MDS, caregivers, health professionals worldwide
Other language(s): Spanish, French, German, Danish

Mission:  A multi-disciplinary, international organization devoted to MDS support, research, treatment, and education for patients, caregivers, physicians, nurses and other health care providers. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.

  • Provides disease information, insurance information and publications
  • Offers patient advocacy groups, research funding, and professional educational initiatives
  • Referrals to MDS Centers of Excellence and clinical trials
  • Conducts international symposia.
last updated on Wednesday, March 26, 2014
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