Population served: Patients, caregivers, health professionals
To support cures and improve the quality of life for people living with blood cancer in Brazil.
- Serves Brazil and Latin America
- Provides disease, treatment and clinical trial information as well as materials about blood cancers
- Offers psychological, legal, nutritional support and more
- Advocates for patient access to treatment
- Collects data
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.
Population served: Patients with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases and their families
To support patients and families worldwide living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases
- 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.
Population served: Patients, caregivers, health professionals worldwide
Other language(s): Spanish, HebrewMission:
Dedicated to accelerating research and treatment for Castleman Disease (a group of inflammatory disorders) to improve survival for all patients.
- Provides disease and treatment information, online patient forum, patient registry, lists of publications and resources.
Population served: Children with life-threatening conditions and their families
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.
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.
Population served: Patients, family members, and caregivers affected by Erdheim-Chester Disease, health professionals, worldwide
Other language(s): Spanish, French, and many other languagesMission:
Dedicated to awareness, support, education, and research related to Erdheim-Chester Disease, a rare multi-system histiocytic syndrome.
- Provides disease and clinical trial information, publications, referrals to physicians and care centers, patient registry, educational events, online supports
- Funds research exploring the diagnosis, cause, treatments, and cure of Erdheim-Chester Disease
- Advocates on behalf of Erdheim-Chester Disease patients
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): SpanishMission:
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.
Population served: Those in need of a stem cell transplant or anyone looking to be a bone marrow donor
Other language(s): Spanish, PortugueseMission:
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.
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.
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, DutchMission:
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.
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, HungarianMission:
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.
Population served: Children with life-threatening medical conditions that have reached the age of 3 and are under the age of 18 at the time of referral. Children must not have already have had a wish granted by any other wish granting organization.
Other language(s): There are currently 39 affiliates outside of the USA. For an up-to-date list of the countries we are in, please go to http://worldwish.org, Select Country dropdown menuMission:
The mission of Make-A-Wish International is to grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.
- Every wish experience is driven by the wish child’s interests, creativity and personality.
- Healthcare professionals, parents, legal guardians and potential wish recipients can initiate the referral inquiry process.
- The child's treating physician will be contacted to determine whether the child meets our eligibility criteria at the time they are referred.
Population served: Patients, caregivers, health professionals
To fund research and to provide free services to support people with leukaemia, lymphoma, myeloma and related blood disorders, and their families in Australia.
- Provides assistance over the phone, online and in person
- Offers disease, treatment and clinical trial information
- Helps with ground transportation, utilities and lodging
- Offers publications, DVDs, teleconferences
- Provides support groups, peer matching and counseling
- Funds research into the causes, epidemiology, diagnosis and treatment, psychosocial impact, management and cures of blood cancers and related disorders.
Population served: People diagnosed with myeloproliferative disorders worldwide, professionals
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
Population served: People diagnosed with a myeloproliferative neoplasm (MPN) worldwide
Other language(s): SpanishMission:
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
Population served: Myeloma patients and their families in Europe
Other language(s): Spanish, French, Arabic, Czech, German, Greek, Italian, Polish, Portuguese, Romanian, Russian, TurkishMission:
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.
Population served: Patients in need of bone marrow and/or umbilical cord blood transplants, worldwide
Provides assistance to people in need of a bone marrow/umbilical 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.
Population served: Patients with MPNs, caregivers and healthcare professionals worldwide
To provide a comprehensive, easy to navigate resource hub for the study of Myeloproliferative Neoplasms (MPNs) such as Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis.
- Provides MPN Search, a custom search engine and MPN News Feed for regular updates
- Offers electronic newsletter, blog and videos
- Lists MPN-related events, resources, and links to online support groups
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.
Population served: Eye cancer patients and their families, health professionals
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
Population served: People with a diagnosis of a blood cancer or rare cancer, caregivers, health professionals
Other language(s): Spanish, FrenchMission:
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.
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.
Population served: Children with cancer and their families, caregivers, survivors, health professionals
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.
Population served: Patients with cancer and health professionals worldwide
UICC is a membership organization that exists to help the global health community accelerate the fight against cancer. Member organizations work in cooperation as expert groups and task forces.
- Offers grant money for fellowships and training opportunities to medical professionals
- Consists of 770 member organizations in 155 countries.