American Cancer Fund (ACF)

Contact: 908-431-9800
Population 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.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.

CenterWatch

Contact: Website only
Population 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: 888-346-3656
Population 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 888.932.6568
Population served: Patients, families, caregivers
Other language(s): Spanish and Chinese
Mission:

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 925-820-4517
Population served: Cancer patients in the US
Other language(s): Spanish, Mandarin, Korean
Mission:

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 International

Contact: 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, Urdu
Mission:

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 Crowd

Contact: Website
Population served: Patients with myeloma and caregivers
Other language(s): Spanish
Mission:

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: 800-422-6237
Population served: Cancer patients, caregivers, family, friends, healthcare providers, researchers
Other language(s): Spanish
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).

St. Jude International Outreach Program

Contact: 901-595-2349
Population 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: 206-661-2253
Population 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.