American Cancer Fund (ACF)
Contact: 908-431-9800Population served: Anyone affected by cancer and needing information
Mission:
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
Aplastic Anemia & MDS International Foundation
Contact: 800-747-2820 or help@aamds.orgPopulation 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
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Find A Specialist: online search tool.
CenterWatch
Contact: Website onlyPopulation served: The general public and health professionals interested in clinical trials primarily in the U.S.
Mission:
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
Clinicaltrials.gov
Contact: 888-346-3656Population served: People seeking information about clinical trials, worldwide
Mission:
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 Registry
Contact: 888.CORD.BLOOD or 888.932.6568Population 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 Foundation
Contact: 877-866-9523 or 925-820-4517Population 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
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Provides community outreach and education.
MPN Advocacy and Education International
Contact: 517-899-6889Population 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
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Engages legislators and governmental bodies on behalf of their constituents to ensure the MPN Community is represented.
Myeloma Crowd
Contact: WebsitePopulation served: Patients with myeloma and caregivers
Other language(s): SpanishMission:
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 CrowdCare Foundation, a patient-driven nonprofit organization. It provides online disease, treatment, clinical trial and research information, telephone/web education, articles, e-newsletter, videos, monthly meet-ups, and Facebook groups. The website lists financial resources and myeloma specialists. It also offers HealthTree, a patient-powered software tool to manage disease-related information such as medical history, test results and more.
National Cancer Institute's Cancer Information Service
Contact: 800-422-6237Population 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 Program
Contact: 901-595-2349Population served: pediatric blood cancer patients, their caregivers, and healthcare providers specializing in pediatric catastrophic diseases worldwide
Mission:
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 Foundation
Contact: 206-661-2253Population served: Patients, caregivers, healthcare professionals, researchers
Mission:
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.