Myeloproliferative Neoplasms

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.

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

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.

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.
• MPN PROGRESSion Registry™ a patient-focused research initiative that collects comprehensive, long-term, myeloproliferative neoplasm (MPN) patient health data.

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.

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.

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
• Offers a patient-sourced directory of MPN specialists reviewed by an MPN expert