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Myeloproliferative Neoplasms

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.

MPN Advocacy and Education International

Contact: 517-899-6889
Population Served:

Patients with myeloproliferative neoplasms (Essential Thrombocythemia, Idiopathic Myelofibrosis, Polycythemia Vera), caregivers, professionals worldwide

To make a difference in the lives of those affected by myeloproliferative neoplasms.

  • Offers disease, treatment and clinical trial information
  • Website lists online and in-person support groups worldwide
  • Offers an email digest, educational events and webcasts
  • Provides outreach to the entire MPN community to grow awareness, understanding, and a better quality of life for MPN patients
  • Engages legislators and governmental bodies on behalf of their constituents to ensure the MPN Community is represented.

MPN Cancer Connection

Contact: Website
Population Served:

Patients diagnosed with Myeloproliferative Neoplasms (MPNs), caregivers, professionals

To empower patients to better understand their disease and treatment options; to improve patient care

  • Provides information about the MPNs such as Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis
  • Provides links to recent news, articles, Facebook groups and resources

MPN Community Support

Contact: Website only
Population Served:

Patients diagnosed with Myeloproliferative Neoplasms (MPNs), caregivers, professionals

To provide a directory of resources for people living with MPNs (Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis)

  • Curated by MPN patients and advocates
  • Provides links to reputable MPN-related resources, such as for support services, financial assistance, clinical trials, transplant information, etc.

MPN Education Foundation

Contact: Website only
Population Served:

Patients, caregivers, health professionals worldwide

To bring education, information and emotional support to MPN patients; to increase awareness amongst patients, physicians and caregivers of myeloproliferative neoplasms.

  • Serves patients with Chronic Myeloid Leukemia, Essential Thrombocythemia, Myelofibrosis, Polycythemia Vera and associated disorders
  • Provides disease, treatment and clinical trial information
  • Offers MPN-NET, an online support group, as well as face to face support groups
  • Offers conferences, newsletters and online videos
  • Provides referrals to specialists and links to medical literature.

MPN Research Foundation

Contact: 773-977-7216
Population Served:

People diagnosed with a myeloproliferative neoplasm (MPN) worldwide

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

National Organization for Rare Disorders, Inc. (NORD)

Contact: 203-744-0100 or 800-999-6673
Population Served:

Patients in the U.S. with rare diseases

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.

PV Reporter

Contact: Website only
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