The Strength of the MPN Community

The strength of a community is determined by how well it is able to take care of itself.

How strong is the MPN community?

When you do a little research, you immediately see how vibrant this community is. There are so many MPN chat groups, advocacy organizations, Facebook pages, Twitter accounts, and forums we cannot count or list them here. People can get encouragement, information, friendship. People can also get support from organizations not just focused on MPNs. Patient Power has included MPNs in their focus. The National Organization of Rare Disorders (NORD) also provides support for MPN patients. The Leukemia and Lymphoma Society is one of our important partners.

It is the spirit and generosity of MPN patients, family and friends that enables the MPN Research Foundation to fund research that promotes medical innovations that have potentially high rewards. The MPN community is small in population, but immense in spirit and generosity.

When you read this Blog will get a snapshot of the MPN community. You may have heard that the MPN Research Foundation has helped fund every major advancement in MPN science. In the coming months this blog will provide readers with information about how our current research focus is pushing MPN Science. MPN Research Foundation leadership will be providing their perspective on the where MPN science is going and why. You will receive firsthand accounts from patients and families who are “Leading by Example” by hosting events that help raise funds and MPN awareness. We are inviting MPN patients to “Share Your Journey”. 

We also need to hear from you. We want to address the things what will be helpful for you. The only time a comment is not helpful is when there is no comment.

Want to learn more now?

Our website has an article from the New England Journal of Medicine report on randomized trial of Ruxolitinib vs phlebotomy in Hydroxyurea-resistant PV. See more here.

Did you know February 4th was designated as World Cancer Day by the United Nations. If you visited our Facebook page you would have.

Thanks for reading.

Enjoy our community.

Author: Crowley, William

Bill Crowley has worked with blood cancer patients, family and friends for over 15 years. As the Director of Development, he helps supporters appreciate how their gifts impact MPN research.

About the Blog

Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..



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