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: 773-977-7216Population 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
National Organization for Rare Disorders, Inc. (NORD)
Contact: 203-744-0100 or 800-999-6673Population served: Patients in the U.S. with rare diseases
Mission:
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 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