MPN Advocacy and Education International
Contact: 517-899-6889Population served: Patients with myeloproliferative neoplasms (Essential Thrombocythemia, Idiopathic Myelofibrosis, Polycythemia Vera), caregivers, professionals worldwide
Other language(s): All European, Spanish, Arabic, Japanese, UrduMission:
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
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Engages legislators and governmental bodies on behalf of their constituents to ensure the MPN Community is represented.
MPN Cancer Connection
Contact: WebsitePopulation served: Patients diagnosed with Myeloproliferative Neoplasms (MPNs), caregivers, professionals
Mission:
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 onlyPopulation served: Patients diagnosed with Myeloproliferative Neoplasms (MPNs), caregivers, professionals
Mission:
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 onlyPopulation served: Patients, caregivers, health professionals worldwide
Mission:
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: 312-683-7249Population served: People diagnosed with a myeloproliferative neoplasm (MPN) worldwide
Other language(s): SpanishMission:
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
PV Reporter
Contact: Website onlyPopulation served: Patients with MPNs, caregivers and healthcare professionals worldwide
Mission:
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