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American Cancer Society (ACS)
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.
- Look Good, Feel Better program for female adults and teens helps with self-image during chemotherapy and radiation treatments
- 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
- Offers financial support for such needs as travel expenses, temporary lodging while receiving treatment far from home, and education scholarships
- Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges (please check with ACS for more information)
- Offers camps for children currently in treatment or in remission, ages 5 to 21.
Aplastic Anemia & MDS International Foundation
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
- Provides free educational materials, the latest medical and treatment information, and clinical trials information
- Offers guidance for living well with a bone marrow failure disease
- Online Learning Center offers webcasts, interviews with experts, interactive learning modules, live webinars
- Peer Support Network enables patients to talk with trained patient volunteers who can share treatment experiences and provide emotional support and understanding
- Matthew Debono Memorial Scholarship Fund for students who are U.S. residents under the age of 35, diagnosed with a rare bone marrow failure disease and meeting all eligibility guidelines
- Standing Up for Your Health to learn how to become a strong advocate for your best health care
- Communities of Hope are volunteer-led local groups, working together with AA&MDSIF staff, connecting patient and families to provide peer support and information exchange and to raise awareness and support for AA&MDSIF programs.
MPN Advocacy and Education International
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
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
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.