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Myeloma

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 infocenter@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 Cancer Society (ACS)

In the U.S., ACS is a community-based voluntary health organization dedicated to eliminating cancer as a major health problem.

  • Provides educational materials both online and in print about cancer, including blood cancers, as well as related information on topics such as diet, exercise, complementary and alternative medicine, and disease statistics
  • Offers support services via online discussion boards and in-person support groups through local chapters
  • Cancer Survivors NetworkSM, a global online community, transcends geographic boundaries and builds bonds among cancer survivors and caregivers through shared experiences and feelings
  • Road to Recovery, a program offered locally by some chapters, has volunteer drivers who transport patients to and from treatment appointments
  • Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges
  • American Cancer Society’s Wig Bank - Provides free wigs from limited supply to needy patients suffering hair loss due to cancer treatment. Intended for those with insufficient insurance coverage for cranial prostheses (wigs).

People affected by a cancer internationally; programs and services offered to patients and caregivers residing in the United States

800-227-2345 http://www.cancer.org/

Global Resource for Advancing Cancer Education (GRACE)

To provide expert-mediated information on current and emerging cancer management options in order to empower patients, caregivers, and health professionals to become direct partners in cancer care.

  • Offers cancer information and video library, podcasts, email newsletter and online discussion forums.

People with blood cancer (and lung or head & neck cancer), caregivers, health professionals

1-888-501-1025 or info@cancerGRACE.org http://cancergrace.org/

International Myeloma Foundation (IMF)

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 professionals

800-452-2873 (US & Canada) or 818-487-7455 (Worldwide) http://myeloma.org

Multiple Myeloma Research Foundation

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.

Patients with myeloma, caregivers, professionals, researchers

203-229-0464 http://www.themmrf.org

Myeloma Crowd

To empower patients each step of their disease journey – from diagnosis, through education, care and on to a cure.

  • Myeloma Crowd is a division of The CrowdCare Foundation, a patient-driven nonprofit organization.  It provides online disease, treatment, clinical trial and research information, telephone/web education, articles, e-newsletter, videos, monthly meet-ups, and Facebook groups.  The website lists financial resources and myeloma specialists.  It also offers HealthTree, a patient-powered software tool to manage disease-related information such as medical history, test results and more.

Patients with myeloma and caregivers

Website https://www.myelomacrowd.org/

National Cancer Institute's Cancer Information Service

To provide accurate, up-to-date, and reliable information on cancer that is easy to understand; this free service is a federally funded cancer education program.

  • Offers trained information specialists who can answer cancer-related questions on a range of cancer topics (but is not a substitute for medical advice).

Cancer patients, caregivers, family, friends, healthcare providers, researchers

800-422-6237 https://www.cancer.gov/contact

National Organization for Rare Disorders, Inc. (NORD)

NORD is leading the fight to improve the lives of rare disease patients and families. We do this by supporting the rare community – its people and organizations – and by working together to accelerate research, raise awareness, provide direct assistance and drive public policy.

  • Administers Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford
  • The Patient Information Center provides information on thousands of rare disorders and resources
  • The Rare Caregiver Respite Program offers limited financial assistance to eligible caregivers so that they can take a break from caregiver responsibilities
  • Hosts regional and national meetings for patients and families
  • Works collaboratively with a growing roster of member organizations.

Patients in the U.S. with rare diseases

203-744-0100 or 800-999-6673 https://rarediseases.org/

Patient Power

To provide cancer patients with the resources and information needed to live well with cancer.

  • Provides an online portal of cancer information in a library of programs, organized into ‘health centers’. Information from medical conferences as well as interviews featuring top medical experts are continually added to the site.

Patients and caregivers

comments@patientpower.info http://www.patientpower.info/