The MPN Research Foundation is committed to providing information about and links to all MPN patient groups serving our patient population, and to working together with them for the benefit of all patients. We maintain lists of MPN patient groups on our website and are proud to be actively working with many of these groups as partners on specific projects.
The MPN Coalition
In 2012, a group of non-profit advocacy groups were convened to pool resources and ideas for supporting MPN patients. This group, which has been named the MPN Coalition. Member foundations and their representatives include:
- The Leukemia & Lymphoma Society (Edith Templeton, RN |Information Specialist Information Resource Center)
- CancerCare, Inc. (Rosalie Canosa, Program Division Director)
- Cancer Support Community (Sara Goldberger, Senior Director of Programs)
- MPN Advocacy and Education International (Ann Brazeau, CEO)
- MPN Education Foundation (Antje Hjerpe, Executive Vice President and Bob Niblack, Founder)
- MPN Research Foundation (Raquel Nunez, Development Associate)
- National Organization for Rare Disorders (NORD) (Mary Dunkle, VP of Communications)
The MPN Coalition was formed to provide a forum for discussion of and action on needs and challenges facing those living with an MPN. The goal is to create greater awareness of MPNs and to enhance education and access to care. The Coalition believes that there is power in numbers and that each organization can reach more patients, caregivers, physicians and communities than one organization whose reach is limited.
The Coalition's vision is to:
- Provide access to appropriate treatments for all MPN patients
- Grow awareness in all disease groups and physician group
- Create and engage patients and physicians in comprehensive educational programs and offer support for both
- Make sure MPN patients and families receive state-of-the-art care now and hope for better options in the future
By combining resources and efforts, the MPN Coalition has the potential to not only reach more patients and physicians who see MPN patients, but it will engage communities that may otherwise never have access to the correct information about their blood cancer or know about the treatment options now available to them.
We at the MPN Research Foundation are proud to currently be the leader of such a dedicated group of people and organizations who understand the value in research, advocacy, access, education and quality care for all MPN patients.