Skip to main content

Myelodysplastic Syndromes

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 infocenter@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)

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

  • Provides educational materials both online and in print about cancer, including blood cancers, as well as related information on topics 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
  • Cancer Survivors NetworkSM, a global online community, transcends geographic boundaries and builds bonds among cancer survivors and caregivers through shared experiences and feelings
  • Road to Recovery, a program offered locally by some chapters, has volunteer drivers who transport patients to and from treatment appointments
  • Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges
  • 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 cranial prostheses (wigs).

People affected by a cancer internationally; programs and services offered to patients and caregivers residing in the United States

800-227-2345 http://www.cancer.org/

Aplastic Anemia & MDS International Foundation

To support, connect and educate patients, caregivers and health professionals on bone marrow failure diseases worldwide

  • Free educational materials: Information on research, treatment, and clinical trials
  • Online Academy: Live webinars, webcasts, interviews with experts, and interactive learning modules
  • Peer Support Network: Patients and caregivers can speak with trained patient volunteers who share treatment experiences and provide emotional support
  • Community Connections: Volunteer-led regional support groups connecting patient and families
  • Online Community: MarrowCommunity.org is an online community for patients with bone marrow failure and their families. Members can connect with others, share resources, learn about upcoming events and have their questions answered.
  • Educational Conferences: Our free conferences in cities around the country offer learning opportunities from leading medical experts, and the ability to connect directly with other patients and caregivers
  • Travel Assistance: To ensure that patients can see a specialist to seek the best course of treatment. Financial aid may be available for U.S.-based patients with demonstrated financial need
  • Find A Specialist: online search tool.

Patients and families living with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases

800-747-2820 or help@aamds.org http://www.aamds.org

National Cancer Institute's Cancer Information Service

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

  • Offers trained information specialists who can answer cancer-related questions on a range of cancer topics (but is not a substitute for medical advice).

Cancer patients, caregivers, family, friends, healthcare providers, researchers

800-422-6237 https://www.cancer.gov/contact

National Organization for Rare Disorders, Inc. (NORD)

NORD is leading the fight to improve the lives of rare disease patients and families. We do this by supporting the rare community – its people and organizations – and by working together to accelerate research, raise awareness, provide direct assistance and drive public policy.

  • Administers Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford
  • The Patient Information Center provides information on thousands of rare disorders and resources
  • The Rare Caregiver Respite Program offers limited financial assistance to eligible caregivers so that they can take a break from caregiver responsibilities
  • Hosts regional and national meetings for patients and families
  • Works collaboratively with a growing roster of member organizations.

Patients in the U.S. with rare diseases

203-744-0100 or 800-999-6673 https://rarediseases.org/

The Myelodysplastic Syndromes (MDS) Foundation, Inc.

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.

Patients with MDS, caregivers, health professionals worldwide

800-637-0839 or 609-298-1035 http://www.mds-foundation.org/