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More to Explore - Information About Blood Cancers for Patients, Families and Healthcare Professionals

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Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please email thedirectory@lls.org. Because we want to be sure that our visitors find the most relevant resources, we encourage you to visit the organization's website for more detailed information.

American Association of Sexuality Educators, Counselors and Therapists (AASECT)
Contact: 202-449-1099
Population served: Patients and health professionals

Mission: 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): Spanish

Mission: 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.Net
Contact: 888-651-3038
Population served:
People diagnosed with cancer, caregivers, and professionals in the U.S.
Other language(s): Spanish

Mission: 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
Other language(s): Spanish

Mission: ASH's mission is 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
  • Offers Find a Hematologist search tool for U.S. residents.

Association of Oncology Social Work (AOSW)
Contact: 215-599-6093
Population served: Patients, caregivers, health professionals

Mission: 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 Foundation
Contact: 713-745-0653
Population served: Patients and health professionals interested in CLL information

Mission: 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 Network
Contact: 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 Spanish

Mission: 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 Foundation
Contact: 248-644-9014
Population served: Anyone seeking information on cutaneous lymphoma (CL)

Mission: 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

Mission: 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.

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 phone

Mission: 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.

Mantle Cell Lymphoma Consortium
Contact
: 800-500-9976
Population served: Anyone affected by mantle cell lymphoma

Mission:  To provide helpful information and resources to patients, caregivers, physicians, and others affected by mantle cell lymphoma (MCL)

  • Offers FocusOnMCL.org website, hosted by the Lymphoma Research Foundation
  • Provides disease and treatment information, support services, educational programs, publications

MPD Voice
Contact:
Website only
Population served: People diagnosed with myeloproliferative disorders worldwide, professionals

Mission: To provide clear and accurate information and emotional support to everyone who suffers from a myeloproliferative disorder; to fund research towards better treatments - and one day a cure.

  • Provides disease and treatment information, tips for coping with everyday challenges
  • Information on clinical trials
  • Support services including peer to peer matching, online support group/chat
  • Offers newsletters, publications and videos
  • Sponsors several forums per year in London

Multiple Myeloma Research Foundation (MMRF)
Contact:
203-229-0464
Population served: Patients with myeloma, caregivers, professionals, researchers

Mission: 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

Mission: 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)
(formerly the National Center for Complementary and Alternative Medicine- NCCAM)
Contact: 888-644-6226
Population served: People in the U.S. seeking scientific information on complementary health approaches
Other language(s): Spanish

Mission: To provide information on complementary health approaches and NCCAM, including publications and searches of federal databases of scientific and medical literature.

  • NCCAM's Information Clearinghouse has Information Specialists available to search NCCAM databases and answer inquiries via phone or email
  • Distributes NCCAM 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

Mission: 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 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.

The American Fertility Association
Contact:
888-917-3777
Population served: Men and women of reproductive age
Other language(s): Spanish

Mission:  To help people create their families of choice by providing leading-edge outreach programs and timely educational information.

  • Provides information about reproductive and sexual health, infertility prevention and treatment, and family-building options including adoption and third party solutions
  • Offers educational outreach events, online library, daily blog, resource directory, telephone and in-person coaching, and a toll-free support line
  • Provides online search tool for referrals to professionals.

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.

Union For International Cancer Control (UICC)
Contact: 41 22 809 1811 (Headquarters in Switzerland)
Population served: Healthcare professionals worldwide

UICC is a nongovernmental association with member organizations working in cooperation as expert groups and task forces.

  • Offers grant money for fellowships and training opportunities
  • 280 member organizations in over 90 countries
last updated on Thursday, December 18, 2014
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