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How International Myeloma Organizations Make a Difference

Myeloma organizations worldwide serve as vital partners in improving outcomes and quality of life for patients across different regions. country-specific resources for those outside the United States, from education and advocacy to patient support networks.

These groups understand the local challenges and work to connect patients, care partners, and healthcare professionals with the tools they need to manage multiple myeloma. Their work reflects a deep understanding of local needs and healthcare realities: 

  • Promote early recognition: Many organizations lead awareness efforts to improve how quickly myeloma is identified and diagnosed within their countries. 
  • Work to expand treatment access: They advocate for improved access to essential therapies, clinical trials, and specialized care where it may be limited. 
  • Provide trusted, local information: These organizations publish accurate, relevant materials in local languages and formats to help patients and families stay informed. 
  • Foster connection and support: They create opportunities for patients and care providers to connect through group meetings, helplines, or online communities.
  • Collaborate across the healthcare system: Working alongside clinicians, researchers, and policy leaders, myeloma organizations help strengthen care pathways and support services. 

 

International Myeloma Support Organizations

Support for people living with myeloma and different cancers exists worldwide. Organizations on many continents provide information, advocacy, and community-based resources tailored to their local context.

Asia-Pacific

The National Cancer Center is a cancer treatment and research hub in Japan that has been a leader in the field since 1962. It has hospitals, a research institute, a clinical trial center, and much more for local and international patients. 

Australia

Myeloma Australia offers compassionate support and reliable information to people affected by multiple myeloma. Their team of specialist nurses helps educate patients, families, and healthcare professionals involved in care and treatment. The organization also actively raises public awareness and advocates for better access to the latest therapies at fair and affordable prices.

Africa

Through CANSA's Mkhula Care Home, the South African-based CANSA BMSF Multiple Myeloma Program offers accommodation, transport, meals, and support for myeloma patients in certain regions.

Europe

Here are some of the organizations in Europe:

  • Blood Cancer U.K.: This organization funds world-class research and offers expert information and support to anyone affected by leukemia, lymphoma, myeloma, and other blood-cancer-related disorders.
  • European Cancer Patient Coalition: The European Cancer Patient Coalition (ECPC) was launched in 2003 to represent the views of cancer patients in the European health care debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.
  • German-Speaking Myeloma Support Group: As part of the AMM online nonprofit association, the German-speaking myeloma community provides information covering every stage of the condition, from MGUS and smoldering myeloma to cases requiring active treatment. The network focused on sharing clear, accessible guidance to support patients throughout their journey.
  • Myeloma U.K.: This is the only organization in the U.K. focused on myeloma, with the mission to help myeloma patients live longer and with a better quality of life.
  • U.K. Myeloma Forum: This U.K.-based forum aims to improve the care of patients with myeloma by developing and promoting trials and providing education about myeloma to healthcare professionals and patients.

Middle East

The Israeli Association of Myeloma Patients, known as the AMEN Foundation, supports myeloma patients and family members in Israel. This organization is unique because multiple myeloma patients established it.

North America

There are several organizations in North America: 

  • Air Care Alliance: The Air Care Alliance connects patients needing medical transportation with volunteer pilot organizations that provide free flights for health-related travel.
  • Canadian Cancer Society: This Canadian national, community-based organization of volunteers works toward the eradication of cancer and the enhancement of the quality of life of people living with cancer.
  • Myeloma Canada: Myeloma Canada was created in 2004 by and for people living with multiple myeloma. It provides educational resources and emotional support to patients, families, and caregivers to increase awareness of the disease and its effects on the lives of patients and families. It also promotes clinical research and access to new drug trials in Canada and facilitates access to new therapies, treatment options, and health care resources.
  • Lymphoma Canada: This organization provides free electronic and print materials in both English and French, as well as support groups, educational forums, and advocacy. It also provides research funding.
  • Long-Term Care Planning Network (Canada): This Canadian resource provides information on aging, caregiving, and long-term care planning.

South America

Organizations you can find in South America are: 

  • IMF Latin America: Continuing the work of the International Myeloma Foundation, IMF Latin America aims to bring to the patients and the South American medical community the same services now available in the U.S., the U.K., and Japan. 
  • Sociedad Argentina de Hematología: The Argentine Society of Hematology (SAH) provides academic updating, certification-recertification, and accreditation training for professionals who aspire to work in hematology.

 

International Resources for Myeloma Patients

Some international resources include: 

  • International Cancer Information Service Group: The International Cancer Information Service Group (ICISG) is a worldwide network of more than 50 organizations that deliver cancer information.
  • The Max Foundation: The Max Foundation is a U.S.-based nonprofit 501(c)(3) cancer organization with an international focus. The Max Foundation honors the spirit and life of Maximiliano (Max) Rivarola, who was diagnosed with chronic myeloid leukemia (CML) at age 14 and lived with outstanding courage until 17 years of age.

 

Supporting the Myeloma Community Worldwide

The good news is that international myeloma support is growing. Whether through advocacy, education, or community programs, organizations in many regions are helping patients, healthcare practitioners, and care partners navigate the challenges of this disease. While resources vary, the goal remains the same — improving the quality of life and access to care for people diagnosed with multiple myeloma, no matter where they are. 

 

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