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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 for Cancer Research (AACR)
Contact:
866-423-3965
Population served: Patients and health professionals

Mission:  To prevent and cure cancer through research, education, communication, and collaboration. Through its programs and services, the AACR fosters research in cancer and related biomedical science; accelerates the dissemination of new research findings among scientists and others dedicated to the conquest of cancer; promotes science education and training; and advances the understanding of cancer etiology, prevention, diagnosis, and treatment throughout the world.

Aplastic Anemia & MDS International Foundation
Contact: 800-747-2820
Population served: Patients with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases and their families

Mission: To support patients and families worldwide living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases

Resources include:

  • Free educational materials, the latest medical and treatment information, and clinical trials information
  • Online Learning Center, with webcasts, interviews with experts, interactive learning modules, live webinars
  • Guidance for living well with bone marrow failure diseases
  • Support Connection enabling patients to talk with trained patient volunteers who share treatment experiences and provide emotional support
  • Communities of Hope: Volunteer-led local groups connecting patient and families for peer support and information exchange
  • Matthew Debono Memorial Scholarship Fund for students who are U.S. residents age 35 and under, diagnosed with a rare bone marrow failure disease (aplastic anemia, MDS or PNH) and who meet all other eligibility guidelines.

Children's Hospice International (CHI)
Contact: 800-242-4453
Population served: Children with life-threatening conditions and their families

Mission: To create public awareness of the needs of children with life-threatening conditions and their families, and of what children's hospice care can do to meet those needs; to include hospice perspectives in all areas of pediatric care and education; to include children with life-threatening conditions and their families in existing and developing hospice, palliative, end-of-life, and home care programs; to create and maintain a sustaining resource base.

  • Community-based palliative (comfort-based) care is available concurrent with disease treatments aimed at cure
  • A continuum of medical, psychological, social, and spiritual support services, respite care, education and advocacy, and bereavement support for families if cure is not attained
  • Services are provided in the most appropriate setting based on family choice, rather than the funding stream
  • Publications devoted to home care, palliative pain and symptom management, the development of hospice care services and related subjects.

Children's Wish Foundation International (CWFI)
Contact: 800-323-9474
Population served: Children, under the age of 18 worldwide, with a life-threatening illness

Mission: Provides an experience of a lifetime in the form of a favorite wish; to fulfill the wish for any child having a limited life expectancy with medical science as we know it today.

In addition to the Wish Program, CWFI also offers:

  • Hospital enrichment program wherein educational and entertainment materials are placed in children's hospitals
  • Family Focus Program allows Wish Families a respite from hospital or treatment life
  • Young Minds Program for children, under the age of four or who function cognitively under the age of four, may be eligible to receive: a TV with DVD player and DVD collection, CD player with music collection, toy and doll collection, etc.

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.

Delete Blood Cancer (DKMS)
Contact: (866) 340-3567 United States
            +49 70 719 430 Germany
            020 3176 7620 United Kingdom
            22 882 9400 Poland
Population Served: Individuals willing to donate bone marrow and patients looking for a match worldwide
Other Language(s): Spanish, German and Polish

Mission: To delete blood cancer by empowering people to take action, give bone marrow and save lives.

  • Has over 3 million registered bone marrow donors worldwide
  • Raises awareness about the urgent need to increase the number and diversity of  bone marrow donors 
  • Provides information about registering to be a donor, organizing donor drives, and the process of donating bone marrow
  • Covers all costs for the donor during the bone marrow/stem cell donation procedure
  • Provides a suitable match of bone marrow/stem cells for the patients.

First Hand Foundation (FHF
Contact: 816-201-1569
Population served: Children 18 years of age or younger, or 18 to 21 years of age if the applicant is in a child-like mental state, worldwide
Other language(s): Spanish

Mission: To provide funding for individual children with health-related needs when insurance and other financial resources have been exhausted.

FHF provides funding for clinical necessities (such as medication, therapy and surgery), medical equipment and travel related to a child's care. Included are:

  • Treatment: clinical procedures, medicine, therapy, prosthesis, etc.
  • Equipment: wheelchairs, assistive technology equipment, care devices, hearing aids, etc.
  • Displacement: lodging, food, gas, parking and transportation for families of seriously ill children who must travel during treatment
  • Vehicle modifications: lifts, ramps and transfer boards.

Icla da Silva Foundation
Contact: 888-638-2870
Population served: Those in need of a stem cell transplant or anyone looking to be a bone marrow donor
Other language(s): Spanish, Portuguese

Mission: To save lives by recruiting bone marrow donors and by providing support services to children and adults with leukemia and other diseases treatable by marrow transplants. 

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.

International Cancer Information Service Group (ICISG) 
Contact: Website only
Population served: People with cancer, their family and friends, the public and health professionals worldwide
Other language(s): Spanish, French, Danish, Hebrew, Chinese, German, Italian, Portuguese, Finnish, Dutch
Mission: ICISG is a worldwide network of more than 50 organizations that deliver cancer information.

The ICISG focus is on:

  • Promotion: Sharing who we are and what we do with other countries.
  • Collaboration: Identifying organizations that wish to start a CIS and helping them find the mentors and the tools they need.
  • The CIS tool box: A web-based tool with tips and resources on how to start a CIS. This is jointly branded with UICC.
  • ICISG Faculty: Developing workshops on starting a CIS (basic and advance courses), for the International Union Against Cancer (UICC) Cancer Congress meetings held several times each year.   

International Myeloma Foundation (IMF)
Contact: 800-452-2873 or 818-487-7455
Population served: Anyone needing information on myeloma, including patients, caregivers and health professionals
Other language(s): Spanish, French, German, Italian, Russian, Japanese, Turkish, Portuguese, Korean, Polish, Greek, Hebrew, Czech, Arabic, Norwegian, Danish, Dutch, Hindi, Afrikaans, Farsi, Armenian, Hungarian

Mission: To improve the quality of life of myeloma patients and their families.

  • Offers disease and treatment information via toll free number and publications
  • Makes referrals to support groups and hosts an on-line support group
  • Offers seminars, workshops and webcasts
  • IMF Advocacy group helps guide individuals to advocate for critical health issues that affect the myeloma community.

Make-A-Wish Foundation
Contact:
800-722-9474
Population served: Children with life-threatening medical conditions that have reached the age of 2½ and is under the age of 18 at the time of referral
Other language(s): Spanish

Mission: To enrich the lives of children with life-threatening medical conditions.

  • Every wish experience is driven by the wish kid's interests, creativity and personality
  • Medical professionals, parents, legal guardians and potential wish kids can initiate the referral inquiry process
  • The child's treating physician will be contacted to determine whether the child is medically eligible for a wish
  • A child cannot have received a wish from another wish-granting organization to be eligible.

MPN Research Foundation
Contact: 312-458-4396
Population served: People diagnosed with a myeloproliferative neoplasm (MPN) worldwide
Other language(s): Spanish

Mission: To stimulate original research in pursuit of new treatments -- and eventually a cure for polycythemia vera, essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms; to promote collaboration in the scientific community to accelerate research; and to serve as a powerful advocacy group for patients and their families.

  • Links patients to support groups worldwide
  • Educates and empowers the MPN community of patients, family members, doctors and researchers
  • Distributes MPN patient brochures and a newsletter to inform patients on key advances in MPN research
  • Sponsors patient conferences
  • Interfaces with government organizations on key patient issues

Myeloma Euronet
Contact:
Website or ++ 49 (0) 6142 / 3 22 40
Population served: Myeloma patients and their families in Europe
Other language(s): Spanish, French, Arabic, Czech, German, Greek, Italian, Polish, Portuguese, Romanian, Russian, Turkish

Mission: To provide information on appropriate diagnosis, treatment, care and support for myeloma patients and their families. 

  • Advocates for myeloma patients and their needs among European Union health care policy makers
  • Ensures equal access to the highest standards of treatment and care
  • Builds partnerships to share experience and expertise
  • Encourages the growth of new multiple myeloma patient groups throughout Europe
  • Raises European awareness of multiple myeloma amongst relevant stakeholders and the public.

National Marrow Donor Program and Be The Match (NMDP)
Contact: 888-999-6743; outside of the United States call 612-362-3410
Population served: Patients in need of bone marrow and/or cord blood transplants, worldwide

Mission: Provides assistance to people in need of a bone marrow/cord blood transplants; and is dedicated to creating an opportunity for all patients to receive a transplant when they need it. NMDP operates the Be The Match Registry®, the world's largest listing of potential marrow donors and donated cord blood units.

  • Be The Match Foundation Patient Assistance Program, for patients who pursue a transplant through Be The Match®, may be eligible for financial aid programs to help pay for the cost of a donor search and for some post-transplant expenses
  • Provides an extensive collection of education materials, webcast presentations
  • Be The Match Patient Services has a team dedicated to helping you learn about marrow and cord blood transplant as a treatment option, the overall transplant process, and what to expect after transplant
  • Peer Connect Program puts a patient/caregiver in touch with one of NMDP's trained volunteers - who are transplant recipients and caregivers - to answer questions and share their own transplant experiences.
  • The Caregiver's Companion Program- combines a useful toolkit with the personalized, confidential support of a caregiver coach who understands transplant and the caregiver role.
    • Receive a toolkit that includes the Caregiver's Companion book with tips, ideas and stories from other caregivers
    • Be paired with a trained Be The Match® coach who will work with your schedule to find a time that's best for you to talk by telephone.

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 Caitlin Raymond International Registry
Contact:
800-726-2824 or 508-334-8969
Population served: Patients and health professionals worldwide searching for unrelated bone marrow or cord blood donor

Mission: The Caitlin Raymond International Registry is a comprehensive resource for patients and physicians conducting a search for unrelated bone marrow or cord blood donor.

  • Affiliated with UMass Memorial Medical Center in Massachusetts
  • Coordinating center for bone marrow, peripheral blood stem cell and placental cord unit search
  • Affiliated with 95 international registries and cord blood banks in 52 countries.

The Eye Cancer Foundation - Eye Cancer Network
Contact: 212-832-8170
Population served: Eye cancer patients and their families, health professionals

Mission: To create a world-class center of excellence for patients and their families diagnosed with ocular tumors, macular degeneration, and related ophthalmic conditions.

  • Formerly the EyeCare Foundation
  • Funds research to find cures for patients with ocular tumors, macular degeneration, and related eye diseases
  • Provides up-to-date treatment information
  • Coordinates clinical trials to evaluate new methods of diagnosis and treatment
  • Offers family and patient support programs to ease emotional stress and real-life adjustment issues related to the severe forms of these conditions
  • Empowers patients to find the resources to improve their lives

The Max Foundation
Contact: 888-462-9368 International: + 1-425-778-8660
Population served: People with a diagnosis of a blood cancer or rare cancer, caregivers, health professionals
Other language(s): Spanish, French

Mission: To improve the lives and survival rates of people living with blood cancer and rare cancers worldwide, with a focus on underserved populations in developing countries.

  • Provides free services of advocacy, emotional support, informational referrals and fundraising mentorship
  • Facilitates access to treatment, partners with healthcare providers and builds advocacy efforts in communities around the world. 

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.

The National Children's Cancer Society (NCCS)
Contact: 314-241-1600 or 800-532-6459
Population served: Children with cancer and their families, caregivers, survivors, health professionals

Mission: To improve the quality of life for children with cancer and their families worldwide.

  • Pediatric Oncology Program (POP) provides financial and emotional support to families throughout the United States during their child's cancer treatment.  Financial assistance for lodging, meals, transportation, health insurance and medical expenses not covered by insurance. (See website for specific financial eligibility criteria.)
  • The "Beyond the Cure" Survivorship Program (BTC) provides the most up-to-date information on survivorship to help survivors and their families adapt and celebrate life after diagnosis
  • Online community provides a private network for parents, caregivers and survivors of childhood cancer to connect, share and offer support to one another
  • Provides resources to healthcare professionals involved in the treatment of childhood cancer and the many challenges associated with survivorship.
  • Global Outreach Program partners with pharmaceutical companies to distribute donated cancer treatment drugs and medical supplies around the world.

Union For International Cancer Control (UICC)
Contact:
41 22 809 1811 (Headquarters in Switzerland)
Population served: Patients with cancer and 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 to medical professionals
  • 280 member organizations in over 90 countries
last updated on Wednesday, March 26, 2014
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