American Cancer Fund (ACF)Contact: 908-431-9800
Population served: Anyone affected by cancer and needing information
ACF™ is dedicated to the education, support and empowerment of those diagnosed with cancer by organizing and clarifying information. Provides information about:
- Living with Cancer
- Clinical Trials
- Complementary and Alternative Medicine
- Nutrition and Exercise
- Oral Health
American Society of Hematology (ASH)Contact: 202-776-0544
Population served: Patients, caregivers and health professionals concerned with blood disorders, worldwide
To further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood, bone marrow, and the immunologic, hemostatic and vascular systems, by promoting research, clinical care, education, training, and advocacy in hematology.
- Provides information about blood basics, blood disorders, and clinical trials (through collaboration with LLS)
- Offers Find A Hematologist search tool for US residents to find hematologists who accept new patients, perform case reviews, or provide second opinions
- Lists websites of patient groups with information about blood diseases
- Provides hematology education, meetings, and publications for clinicians and scientists.
Aplastic Anemia & MDS International FoundationContact: 800-747-2820 or firstname.lastname@example.org
Population served: Patients and families living with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases
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.
CenterWatchContact: Website only
Population served: The general public and health professionals interested in clinical trials primarily in the U.S.
CenterWatch is a source of clinical trials information for patients, caregivers and clinical research professionals.
Offers online tools to:
- Search clinical trials
- Receive email notifications about specific clinical trials
- Review results from completed clinical trials
- Search drug information
- Learn about volunteering for a clinical trial
- Learn about the informed consent process
- Read an overview of the clinical trials process
- Find disease-specific health associations and other educational resources
- Review definitions of commonly-used clinical research terms
Population served: People seeking information about clinical trials, worldwide
ClinicalTrials.gov is a web-based resource that provides patients, their family members, health professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The website is maintained by the National Library of Medicine at the National Institutes of Health. Each clinical trial record presents summary information about a study protocol and includes the following:
- Disease or condition
- Intervention (for example, the medical product, behavior, or procedure being studied)
- Title, description, and design of the study
- Requirements for participation (eligibility criteria)
- Locations where the study is being conducted
- Contact information for the study locations
Cord Blood RegistryContact: 888.CORD.BLOOD or 888.932.6568
Population served: Patients, families, caregivers
Other language(s): Spanish and ChineseMission:
To advance the clinical application of newborn stem cells by partnering with leading research institutions to establish FDA-regulated clinical trials, exclusive to CBR families, for conditions that have no cure today.
- Newborn Possibilities Program® offers free cord blood and tissue processing and five years of storage to qualifying families in the U.S.
- Genetic counselors are available to discuss your family’s medical history and to answer questions about how newborn stem cells might be applicable to your family.
Lazarex Cancer FoundationContact: 877-866-9523 or 925-820-4517
Population served: Cancer patients in the US
Other language(s): Spanish, Mandarin, KoreanMission:
To improve access to clinical trials for cancer patients
- Helps cancer patients navigate clinical trial options
- Offers financial assistance (such as lodging and transportation costs) for participation in FDA approved clinical trials; call for eligibility details
Provides community outreach and education.
MPN Advocacy and Education InternationalContact: 517-899-6889
Population served: Patients with myeloproliferative neoplasms (Essential Thrombocythemia, Idiopathic Myelofibrosis, Polycythemia Vera), caregivers, professionals worldwide
Other language(s): All European, Spanish, Arabic, Japanese, UrduMission:
To make a difference in the lives of those affected by myeloproliferative neoplasms.
- Offers disease, treatment and clinical trial information
- Website lists online and in-person support groups worldwide
- Offers an email digest, educational events and webcasts
- Provides outreach to the entire MPN community to grow awareness, understanding, and a better quality of life for MPN patients
Engages legislators and governmental bodies on behalf of their constituents to ensure the MPN Community is represented.
Myeloma CrowdContact: Website
Population served: Patients with myeloma and caregivers
To empower patients each step of their disease journey – from diagnosis, through education, care and on to a cure.
- Myeloma Crowd is a division of The HealthTree Foundation, a patient-driven nonprofit organization. It provides online disease, treatment, clinical trial and research information, educational programs, articles, monthly meet-ups, myeloma ‘coaches’ and more. The website lists financial resources and myeloma specialists
National Cancer Institute's Cancer Information ServiceContact: 800-422-6237
Population served: Cancer patients, caregivers, family, friends, healthcare providers, researchers
Other language(s): SpanishMission:
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).
St. Jude International Outreach ProgramContact: 901-595-2349
Population served: pediatric blood cancer patients, their caregivers, and healthcare providers specializing in pediatric catastrophic diseases worldwide
To improve the survival rates of children with catastrophic illnesses worldwide, through the transfer of knowledge, technology and organizational skills.
- Program develops partnerships with medical institutions and fund-raising organizations to facilitate the involvement of other agencies and organizations to support key programs and the education of local personnel.
- Sharing knowledge and technology with the local governments, healthcare providers, and the private sector to increase the survival rates of children all across the globe.
- Pediatric specialty committed to caring for and supporting children with cancer regardless of the family’s financial or healthcare resources.
- Clinical trials designed to provide the best available care while answering important research questions.
- Hosts visiting fellows at its campus in Memphis, Tennessee.
- Partner sites in various countries. Please see the website for more details on locations.
T-Cell Leukemia Lymphoma FoundationContact: 206-661-2253
Population served: Patients, caregivers, healthcare professionals, researchers
To provide education and support to patients and to encourage research into these rare cancers
- Provides disease, treatment and clinical trial information for the T-cell leukemias and lymphomas
- Organizes free educational forums
- Offers physician referrals, e-newsletter and links to helpful resources
- Supports scientific research on the T-cell leukemias and lymphomas.