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 at: http://www.mpnresearchfoundation.org/NEJM-evaluates-ruxolitinib-for-hydroxyurea-resistant-polycythemia-vera-vs-phlebotomy#sthash.RpkqaN5l.dpuf
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.
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