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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.

Academy of Nutrition and Dietetics
Contact:
800-877-1600
Population served: Anyone in need of nutritional information
Other language(s): Spanish

Mission:  The world's largest organization of food and nutrition professionals is committed to improving the nation's health and advancing the profession of dietetics through research, education and advocacy.

  • Provides reliable and evidence-based nutrition information for the public
  • Website offers search feature to find a registered dietician by location or expertise

Alex's Lemonade Stand Foundation (ALSF)
Contact:
610-649-3034
Population Served: Children with cancer and their families, caregivers, young adults, healthcare professionals and researchers related to childhood cancer

Mission: To raise money for and awareness of childhood cancer causes-especially research into new treatments and cures-and to encourage and empower others, especially children, to get involved and make a difference for children with cancer.

  • Hero Ambassador Program involves family members of childhood cancer heroes who choose to get more involved with ALSF.
  • Parent to Parent Network provides the opportunity for families to connect with one another through emails, phone calls, or in person.
  • Childhood Cancer Database Project aims to better understand how childhood cancer affects families. The goal is to measure the personal and economic impact of childhood cancer and find ways to support families through the journey.
  • SuperSibs! ALSF joined forces with SuperSibs, which temporarily suspended its direct sibling support services due to a lack of funding. To sign up for updates about SuperSibs program, click here.
  • Childhood Cancer Symposium is a free annual conference for families of kids with cancer.
  • Childhood Cancer Treatment Journal- ALSF provides a free treatment journal (hard copy or online) to families of childhood cancer. Helps parents stay organized and keep track of important information.
  • Travel Fund offers assistance to families who need to financial assistance for childhood cancer treatment at select medical institutions across the U.S. May include help with transportation, lodging, and meals. Applications must be received on behalf of a social worker or another medical representative. For more details, click here.

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.

Association of Pediatric Hematology/Oncology Nurses (APHON)
Contact:
855-202-9760
Population served: Registered nurses, as well as allied health care practitioners who work in the field including child life specialists, social workers, and pastoral care providers, in the U.S., Canada and around the world
Other language(s): Spanish

Mission: To support and advance nurses and their practice in order to optimize outcomes for children, adolescents, and young adults with cancer and blood disorders and their families.

  • Mentoring Program links APHON members in their mutual pursuit of higher goals in the areas of: leadership, professional/career development, role integration, pursuit of higher education, research, nursing teaching/education, clinical development and project development
  • Offers opportunities to earn continuing nursing education credits online
  • Holds conferences several times a year.

American Psychosocial Oncology Society (APOS)
Contact: 866-276-7443 (Cancer Support Community helpline)
Population served: Patients, caregivers and oncology professionals in the U.S.

Mission:  To connect cancer patients and their caregivers to psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress/psychosocial issues.  APOS strives to advance the science and practice of psychosocial care for people affected by cancer.

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 for Radiation Oncology (ASTRO)
Contact:
800-962-7876
Population served:  Health professionals

Mission: To improve patient care through education, clinical practice, advancement of science and advocacy.

  • Provides members with the continuing medical education, health policy analysis, patient information resources and advocacy that they need to succeed in today's ever-changing health care delivery system.

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.

Cancer and Careers
Contact:
Website only
Population served: People affected by the diagnosis of cancer, their caregivers and health providers in the U.S.
Other language(s): Spanish

Mission: To empower and educate people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events; to eliminate fear and uncertainty for working people with cancer.

  • Offers a comprehensive website with information on a variety of work-related issues
  • Free printed publications
  • Career coaching
  • Support groups and educational seminars for employees with cancer, their healthcare providers and co-workers
  • Online comprehensive materials for healthcare professionals
  • Resume review available online with career coaches
  • Legal and career teleconferences
  • In-Service Trainings for Health Care Providers (presented in conjunction with Triage Cancer)

Cancer Financial Assistance Coalition (CFAC)    
Contact: Website only
Population served: People diagnosed with a cancer in the U.S.

Mission: A coalition of financial assistance organizations joining forces to help cancer patients experience better health and well-being by limiting financial challenges.

  • Facilitates communication and collaboration among member organizations
  • Provides information via the website regarding existing resources and linking to other organizations that can disseminate information about the collective resources of the member organizations
  • Advocates on behalf of cancer patients who continue to bear financial burdens associated with the costs of cancer treatment and care.

Center for International Blood and Marrow Transplant Research (CIBMTR)
Contact: 612-884-8600
Population served: Anyone seeking information on stem cell transplant research

Mission: To collaborate with the global scientific community to advance hematopoietic cell transplantation and cellular therapy research worldwide; is a combined research program of the National Marrow Donor Program® and the Medical College of Wisconsin.

  • Conducts research studies to advance understanding and outcomes of hematopoietic cell transplantation
  • Collects and maintains outcomes data on every allogeneic transplantation performed in the U.S.  This database now contains information on more than 330,000 transplant recipients
  • Provides access to outcomes data and research repository samples
  • Provides statistical expertise to researchers
  • Provides education, guidelines and training

Children's Leukemia Research Association (CLRA)
Contact: 516-222-1944
Population served: Children and adults with leukemia in the U.S., professionals

Mission: To support research efforts towards finding the causes and cure for leukemia.  

  • Limited funds to assist with the costs of outpatient chemotherapy, lab tests and post-transplant prescriptions.  Applications are mailed in November each year for assistance in January on a first-come, first-served basis
  • Offers matching dollar program, matching up to $1,500 per year in donations raised by applicant, family or friends during a specific time period
  • Funds grants for doctors conducting promising research about leukemia.

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.

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.

MPN Advocacy and Education International
Contact: 517-899-6889
Population served: Patients with myeloproliferative neoplasms (Essential Thrombocythemia, Idiopathic Myelofibrosis, Polycythemia Vera), caregivers, professionals worldwide

Mission: To provide the knowledge, support, and resources patients will need as they adjust to living with an MPN.

  • Offers disease, treatment and clinical trial information, educational programs, webcasts
  • Website lists online and in-person support groups worldwide
  • Provides outreach to the entire MPN community to grow awareness, understanding, and a better quality of life for MPN patients.

Multiple Myeloma Research Consortium 
Contact: 203-652-0220
Population served: Academic and community-based cancer centers, professionals

Mission: To champion collaboration with and integration across academia and industry; to focus on speed and innovation to bring the most promising multiple myeloma treatments to patients faster.

  • Brings together academic centers with industry partners to conduct highly collaborative clinical trials of novel compounds and combination treatments for multiple myeloma.

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 Academy of Elder Law Attorneys, Inc. (NAELA)
Contact:
703-942-5711
Population served: Elderly, people with disabilities, and their families, attorneys

Mission: To improve the quality of legal services provided to people as they age and people with special needs; the primary focus is education. (NAELA does not provide direct legal services.)

  • Provides online search tool to find an Elder Law or Special Needs attorney
  • Sponsors continuing legal education programs on Elder and Special Needs Law for attorneys 
  • Provides publications and educational materials to its members on a wide range topics 
  • Provides support to other organizations serving people as they age and people with disabilities
  • Advocates on public policy issues facing seniors and people with special needs.

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 Alternative Medicine Clearinghouse (NCCAM)
Contact: 888-644-6226 or 301-519-3153 (outside the United States)
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.

National Comprehensive Cancer Network (NCCN)
Contact: 215-690-0300; 866-788-6226 for educational events
Population served: Patients, caregivers, health professionals

Mission: To improve the quality, effectiveness, and efficiency of cancer care so that patients can live better lives.

  • Alliance of leading cancer centers
  • NCCN Guidelines provide comprehensive and frequently updated clinical practice guidelines
  • NCCN Guidelines for Patients® translate the information that doctors use to help patients and families understand treatment options
  • Offers educational programs and webinars
  • Articles and videos give advice on how to help a loved one with cancer and take care of oneself.
  • Incorporates treatment guidelines and limited recommendations for surveillance and management of common issues facing survivors.

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.

Pablove Foundation
Contact: 323-657-5557
Population served: Children with cancer and researchers
Other language(s): Spanish

Mission: To fund pediatric cancer research and advances in treatment, educate and empower cancer families, and improve the quality of life for children living with cancer through hospital play, music and arts programs.

  • Childhood Cancer Research Grant- awards minimum two research grants $50,000.00 each to fund senior postdoctoral fellows/junior faculty (M.D. or Ph.D.) or to provide seed money to established investigators for innovative basic, translational, clinical, and epidemiological research directed to pediatric and adolescent cancer.
  • Pablove Shutterbugs- teaches children living with cancer to develop their creative voice through the art of photography.

Rally Foundation
Contact: 404-847-1270
Population served: Children with any type of cancer and their families, supporters, researchers

Mission: To empower volunteers across the country to raise awareness and funds for childhood cancer research, to find better treatments with fewer long-term side effects and, ultimately, cures.

  • Become a Rally Researcher- Supports research projects affiliated with Children's Oncology Group or supported by the National Institute of Health and the National Cancer Institute. Awards one year research grants through a rigorous competitive peer review process. For more details, click here.
  • Rally Family Emergency Fund- Offers financial assistance for children under age 21 in current cancer treatment. Fund has an annual cap of $500 and a lifetime cap of $750. Funds may be used to cover a patient's cancer-related medical bills or other family costs related to treatment, e.g. transitional housing. For more details, click here.
  • Become a Rally Kid- Personal stories of cancer patients and survivors, which are inspirational and encourage everyone to Rally in our efforts to raise awareness and funds for childhood cancer research. For more details, click here.
  • Rally Athlete Training Team- Provides independent athletes with personalized fundraising pages and the opportunity to run for a Rally Kid. For more details, click here.

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 Lauri Strauss Leukemia Foundation (LSLF)
Contact: 516-767-1415
Population served:  Health professionals and clinical researchers

Mission:  To find a cure for leukemia, lymphoma, Hodgkin disease, myeloma and allied cancers by means of awarding Discovery Grants to innovative developmental research projects; to conduct marrow donor drives.

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

University of Colorado Cancer Center Fund
(Formerly known as AMC Cancer Research Center)
Contact: 303-724-7823
Population served: Healthcare Professionals

Mission: To discover, develop and deliver breakthroughs in diagnosis, treatment, and prevention that improve cancer care locally, nationally and globally.

  • Create the comprehensive spectrum of translational prevention, diagnosis, treatment, and survivorship and outreach programs and provide a framework for training the next generation of cancer researchers and physicians.
last updated on Monday, September 15, 2014
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