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 email@example.com. 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.
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
Patients, caregivers, health professionalsWebsite or +55 11 3149-5190 http://www.abrale.org.br/
To support, connect and educate patients, caregivers and health professionals on bone marrow failure diseases worldwide
- Free educational materials: Information on research, treatment, and clinical trials
- Online Academy: Live webinars, webcasts, interviews with experts, and interactive learning modules
- Peer Support Network: Patients and caregivers can speak with trained patient volunteers who share treatment experiences and provide emotional support
- Community Connections: Volunteer-led regional support groups connecting patient and families
- Online Community: MarrowCommunity.org is an online community for patients with bone marrow failure and their families. Members can connect with others, share resources, learn about upcoming events and have their questions answered.
- Educational Conferences: Our free conferences in cities around the country offer learning opportunities from leading medical experts, and the ability to connect directly with other patients and caregivers
- Travel Assistance: To ensure that patients can see a specialist to seek the best course of treatment. Financial aid may be available for U.S.-based patients with demonstrated financial need
Find A Specialist: online search tool.
Patients and families living with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases800-747-2820 or firstname.lastname@example.org http://www.aamds.org
To create an opportunity for all patients to receive the blood, marrow, or umbilical cord blood transplant they need; to provide free support, information and transplant-related resources
- Be The Match, operated by the National Marrow Donor Program (NMDP), manages the largest and most diverse marrow registry in the world; conducts research to improve transplant outcomes; provides legislative advocacy to protect patient access to care; provides clinical education for healthcare professionals
- Certified oncology patient navigators and licensed social workers provide confidential, one-on-one support and reliable, easy-to-understand information from diagnosis through recovery. Emotional support is provided through counseling and support groups as well as through connections with others who’ve been through transplant
- Helps to access financial grants and insurance resources, including Be The Match grants
- Provides personalized support to search for and join clinical trials, including the Jason Carter Clinical Trials Program. Visit www.jcctp.org or call 888-814-8610 for details.
Patients, caregivers and families before, during and after a blood or marrow transplant (BMT), healthcare professionals, researchers888-999-6743 or email@example.com https://bethematch.org/
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.
Patients, caregivers, health professionals worldwide610-304-0696 http://www.cdcn.org
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 with life-threatening conditions and their families800-242-4453 http://www.chionline.org
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.
People diagnosed with chronic myeloid leukemia (CML), worldwideWebsite only http://www.cmladvocates.net/
To fight against blood cancer and blood disorders by creating awareness, recruiting bone marrow donors, raising funds, improving therapies and supporting patients.
- Formerly known as Delete Blood Cancer DKMS, this international nonprofit provides information about registering to be a donor, organizing donor drives, and the process of donating bone marrow.
- DKMS is affiliated with the National Marrow Donor Program, so every person registered with DKMS is listed on the Be The Match Registry®.
Individuals willing to donate bone marrow or organize a donor drive212-209-6700 https://www.dkms.org/en
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
Patients, family members, and caregivers affected by Erdheim-Chester Disease, health professionals, worldwideWebsite http://erdheim-chester.org/
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.
Children 18 years of age or younger, or 18 to 21 years of age if the applicant is in a child-like mental state, worldwide816-201-1569 https://www.firsthandfoundation.org/
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.
Those in need of a stem cell transplant or anyone looking to be a bone marrow donor888-638-2870 http://www.icla.org
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.
Palliative care and hospice workers866-374-2472 http://hospicecare.com
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.
People with cancer, their family and friends, the public and health professionals worldwideWebsite only http://www.icisg.org/
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.
Anyone needing information on myeloma, including patients, caregivers and health professionals800-452-2873 (US & Canada) or 818-487-7455 (Worldwide) http://myeloma.org
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
- There are currently 39 affiliates outside of the USA.
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.602-230-9900 (US) or firstname.lastname@example.org https://www.worldwish.org/en
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.
Patients, caregivers, health professionalsWebsite or 1800 620 420 in Australia http://www.leukaemia.org.au/
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
People diagnosed with a myeloproliferative neoplasm (MPN) worldwide773-977-7216 http://www.mpnresearchfoundation.org/
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.
People diagnosed with myeloproliferative neoplasms and their families, caregivers, health professionals worldwideWebsite or call 07934 689 354 https://www.mpnvoice.org.uk/
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.
Myeloma patients and their families in EuropeWebsite or ++ 49 (0) 6142 / 3 22 40 http://myeloma-euronet.lhrm.de/en/myeloma-euronet/about.php
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
Patients with MPNs, caregivers and healthcare professionals worldwideWebsite only http://www.pvreporter.com/
To create, find and support programs that directly improve the health and well being of children.
- 290 local chapters in 57 countries and regions
- Ronald McDonald Houses provide a home-away-from home for families so they can stay close to their hospitalized child at little or no cost
- Ronald McDonald Family Rooms offer a place to rest and regroup right at the hospital
- Ronald McDonald Care Mobiles deliver pediatric health care services
- Provides grants to non-profit organizations that also focus on the needs of children
- Offers scholarships to students across the U.S.
Seriously ill or injured children and their families in the U.S. and some international locations; non-profit organizations; students630-623-7048 https://www.rmhc.org/
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.
pediatric blood cancer patients, their caregivers, and healthcare providers specializing in pediatric catastrophic diseases worldwide901-595-2349 http://www.stjude.org/international
To create a world-class center of excellence for patients and their families diagnosed with ocular tumors, macular degeneration, and related ophthalmic conditions.
- Provides Find A Doctor search tool to locate an eye cancer specialist
- Offers an online support community through Facebook
- Funds research to find cures for patients with ocular tumors and related eye diseases
- Provides eye cancer specialists for unserved and underserved countries.
Eye cancer patients and their families, health professionals worldwide212-832-8170 https://www.eyecancercure.com/
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.
People with a diagnosis of a blood cancer or rare cancer, caregivers, health professionals888-462-9368 International: + 1-425-778-8660 http://www.themaxfoundation.org/
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.
Patients with MDS, caregivers, health professionals worldwide800-637-0839 or 609-298-1035 http://www.mds-foundation.org/
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
- Beyond the Cure Ambassador Scholarship Program awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation; call or see website for details
- 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.
Children with cancer and their families, caregivers, survivors, health professionals314-241-1600 or 800-532-6459 http://www.thenccs.org
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.
Cancer organizations, public health and oncology professionals worldwide41 22 809 1811 (Headquarters in Switzerland) http://www.uicc.org/
To change and save lives through the power of aviation.
- Provides medical air transport services, free of charge, to individuals who need specialized medical care not available to them locally. Aircraft are specially outfitted with stretchers to accommodate fragile and non-ambulatory patients. Individuals are flown to hospitals and treatment centers in 26 states within a 600-mile radius of St. Louis, Missouri
- Has global partnerships in Latin America, Africa and Asia.
Individuals who need specialized medical care and air transportation to treatment, primarily within a 600-mile radius of St. Louis, Missouri.800-448-9487 or 636-537-1302 https://wingsofhope.ngo/