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Myelodysplastic Syndromes

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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

Mission

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.

Aplastic Anemia & MDS International Foundation

Contact: 800-747-2820 or help@aamds.org
Population Served:

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

Mission

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.

National Cancer Institute's Cancer Information Service

Contact: 800-422-6237
Population Served:

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

Mission

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).

National Organization for Rare Disorders, Inc. (NORD)

Contact: 203-744-0100 or 800-999-6673
Population Served:

Patients in the U.S. with rare diseases

Mission

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.

The Myelodysplastic Syndromes (MDS) Foundation, Inc.

Contact: 800-637-0839 or 609-298-1035
Population Served:

Patients with MDS, caregivers, health professionals worldwide

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.