Acute Leukemia Advocates Network (ALAN)Contact: Website
Population served: Healthcare professionals, patient advocates
To change the outcomes of acute leukemia patients by strengthening patient advocacy.
- ALAN is an independent global network of patient organizations which aims to increase awareness about the acute leukemias, share best practices, advocate for better access and treatment, and improve education for healthcare professionals.
American Association of Sexuality Educators, Counselors and Therapists (...Contact: 202-449-1099
Population served: Patients and health professionals
AASECT is a not-for-profit, interdisciplinary professional organization of individuals who share an interest in promoting understanding of human sexuality and healthy sexual behavior. In addition to sexuality educators, sexuality counselors and sex therapists, AASECT members include physicians, nurses, social workers, psychologists, allied health professionals, clergy members, lawyers, sociologists, marriage and family counselors and therapists, family planning specialists and researchers, as well as students in relevant professional disciplines.
- Website offers a search feature to locate a therapist, counselor or educator by country or state.
American Society for Reproductive Medicine (ASRM)Contact: 205-978-5000
Population served: Patients, caregivers and health professionals in the U.S.
Other language(s): SpanishMission:
ASRM is a multidisciplinary organization dedicated to the advancement of the art, science and practice of reproductive medicine. The Society accomplishes its mission through the pursuit of excellence in education and research and through advocacy on behalf of patients, physicians, and affiliated health care providers.
- Provides educational materials on infertility, menopause, contraception, reproductive surgery, endometriosis, and other reproductive disorders
- Offers Find a Health Professional Search tool via the website.
American Society of Clinical Oncology/Cancer.NetContact: 888-651-3038
Population served: People diagnosed with cancer, caregivers, and professionals in the U.S.
Other language(s): SpanishMission:
To bring the expertise and resources of the American Society of Clinical Oncology (ASCO) to people living with cancer and those who care for and care about them.
- Cancer.net website provides patient-focused information produced by ASCO
- Offers a toll-free helpline to people with cancer, their caregivers, family members, and friends to assist them in finding resources that may assist in their search for information.
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.
Association of Oncology Social WorkContact: 847-686-2233
Population served: Patients, caregivers, health professionals
To advance excellence in the psychosocial care of persons with cancer, their families, and caregivers through: networking ,education , advocacy, research, and resource development; AOSW envisions a global society in which oncology care meets the physical, emotional, social and spiritual needs of all people affected by cancer.
- Provides tips for managing cancer and caregiving
- Sets standards of practice for oncology social workers.
CLL Global Research FoundationContact: Website only
Population served: Patients and health professionals interested in CLL information
To abolish chronic lymphocytic leukemia (CLL) as a threat to the life and health of patients.
- Aims to fund patient-oriented projects with rapid clinical applications and to expand the knowledge of CLL on a global scale
- Provided seed money for the formation of two CLL Research Consortiums, one in Australia and one in Israel.
CML Advocates NetworkContact: Website only
Population served: People diagnosed with chronic myeloid leukemia (CML), worldwide
Other language(s): Spanish and French. European Leukemia Net Treatment Guidelines available in Chinese, English, French, German, Hebrew, Hungarian, Italian, Macedonian, Polish, Serbian, and SpanishMission:
To facilitate and support best practice-sharing between patient group organizers across the world.
- Informal online organization designed, published and moderated by CML patients and carers who are registered patient group advocates and organizers.
- Provides a worldwide web directory of CML patient groups, to allow patient groups to find national support groups in another country
- Provides a platform of communication for CML patient advocates
- Builds a knowledge base in the form of a Wiki (like Wikipedia, but dedicated to CML patient advocacy)
- Provides an area where educational material is ready for download to patient advocates.
Cutaneous Lymphoma FoundationContact: 248-644-9014
Population served: Anyone seeking information on cutaneous lymphoma (CL)
To support every person with cutaneous lymphoma by promoting awareness and education, advancing patient care, and facilitating research.
- Provides education and support to patients diagnosed with CL
- Information on website is designed to help physicians, nurses and other health professionals access resources related to cutaneous lymphoma.
International Association for Hospice & Palliative Care (IAHPC)Contact: 866-374-2472
Population served: Palliative care and hospice workers
To collaborate and work to improve the quality of life of patients with advanced life-threatening conditions and their families, by advancing hospice and palliative care programs, education, research, and favorable policies around the world.
- Works with individuals and organizations in developing multiple strategies targeted to raise awareness among the affiliates of the civil society and decision makers so that palliative care is provided and available to those individuals in need, to increase access and availability to analgesics and other medications, to increase the provision of services by adequately trained professionals and caregivers.
International Cancer Information Service Group (ICISG)Contact: Website only
Population served: People with cancer, their family and friends, the public and health professionals worldwide
To help cancer organizations around the world establish or enhance their Cancer Information Service to provide high quality, reliable information and compassionate support resources on all aspects of cancer to those concerned or affected by cancer.
- Provides and shares information and tools for management, evaluation, training and quality
- Promotes collaboration between Cancer Information Services in different countries throughout the world
- Acts as a forum for exchange, discussion and support
- Develops and updates service core values
- Increases awareness of cancer information and support services
- Offers links to general cancer information in multiple languages
- Supports the development of new services throughout the world by providing required tools, education and mentors.
International Myeloma Foundation (IMF)Contact: 800-452-2873 (US & Canada) or 818-487-7455 (Worldwide)
Population served: Anyone needing information on myeloma, including patients, caregivers and health professionals
To improve the quality of life of myeloma patients and their families while working toward prevention and a cure through four founding principles: research, education, support, and advocacy.
- Offers disease and treatment information via toll free number and publications in multiple languages
- Makes referrals to support groups and hosts an on-line support group
- Offers seminars, workshops and webcasts
- Provides Veterans Against Myeloma (VAM), a resource for patients who have served in the military and developed myeloma through their service
- IMF Advocacy group helps guide individuals to advocate for critical health issues that affect the myeloma community
- Supports research initiatives.
Lymphoma Research Foundation (LRF)Contact: 800-500-9976
Population served: Patients with lymphoma and their families, caregivers, health professionals
Other language(s): Spanish, other languages available by phoneMission:
To fund innovative lymphoma research; to provide people with lymphoma and health professionals with up-to-date information about this type of cancer; to eradicate lymphoma and serve those touched by this disease.
- Provides Lymphoma Helpline and Clinical Trials Information Service
- Provides educational materials, conferences, webcasts
- Offers limited financial assistance to patients in active treatment
- Lymphoma Support Network is a one-to-one peer support program that matches lymphoma patients or caregivers with volunteers who have had similar lymphoma-related experiences
- Funds biomedical research focused on the origins, treatment and identification of a cure for lymphoma
- Raises public awareness of the disease.
MPN VoiceContact: Website or call 07934 689 354
Population served: People diagnosed with myeloproliferative neoplasms and their families, caregivers, health professionals worldwide
To provide information, community and advocacy for patients diagnosed with a myeloproliferative neoplasm (such as essential thrombocythemia, polycythemia vera or myelofibrosis), families, caregivers and health professionals
- Based in the United Kingdom, this volunteer-run nonprofit provides disease and treatment information, tips for coping with everyday challenges, and information on clinical trials
- Support services including peer to peer matching, online support group/chat
- Offers newsletters, blog, publications and videos
- Sponsors several forums per year in London.
Multiple Myeloma Research FoundationContact: 203-229-0464
Population served: Patients with myeloma, caregivers, professionals, researchers
To pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure.
- Provides disease and treatment information including clinical trials
- Offers patient and professional educational programs and publications
- Funds multiple myeloma research.
National Association of Social Workers (NASW)Contact: 202-408-8600
Population served: Professional social workers
To enhance the professional growth and development of its members, to create and maintain professional standards, and to advance sound social policies.
National Center for Complementary and Integrative Health (NCCIH)Contact: 888-644-6226
Population served: People in the U.S. seeking scientific information on complementary health approaches
Other language(s): SpanishMission:
To define, through rigorous scientific investigation, the usefulness and safety of complementary and integrative health interventions and their roles in improving health and health care.
- Responds to inquiries via phone or email, and retrieves information from Federal databases of peer-reviewed scientific and medical literature
- Distributes NCCIH publications and selected other federal publications on complementary health approaches
- Makes referrals to other federal resources as appropriate.
Oncology Nursing Society (ONS)Contact: 866-257-4667
Population served: Nurses and health professionals worldwide
To promote excellence in oncology nursing and quality cancer care.
- ONS is a professional organization of over 35,000 registered nurses and other healthcare providers dedicated to excellence in patient care, education, research, and administration in oncology nursing
- Educational programs are provided in a variety of formats, including national conferences, regional workshops, online education, and print-based offerings
- Website offers the latest oncology news, online education opportunities, clinical practice and research information, career center, and legislative action information.
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.
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, DanishMission:
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.
Union for International Cancer Control (UICC)Contact: 41 22 809 1811 (Headquarters in Switzerland)
Population served: Cancer organizations, public health and oncology professionals worldwide
To unite and support the cancer community to reduce the global cancer burden, to promote greater equity, and to ensure that cancer control continues to be a priority in the world health and development agenda.
- UICC is a membership organization consisting of 1188 members, 172 countries, and 58 partners. Member organizations work in cooperation as expert groups and task forces
- Convenes international events; offers fellowships, training courses, and master classes; advocates for cancer prevention and equitable access to care.