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In a few days, the month will change to September, which is recognized nationally as Blood Cancer Awareness Month. While you are already aware of MPNs, or myeloproliferative neoplasms, there are many factors indirectly but adversely affecting people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. A few we hear from patients frequently are:
Friends or family not believing they are "really" sick or have cancer
Insurance or disability denying coverage or a claim
Problems getting medication, either because it is too expensive, their deductible is too high, or the medication is not approved for MPN
No suitable clinical trials for their diagnosis of PV or ET
No way to prevent progression
These are problems being addressed by the MPN Research Foundation and other advocacy groups 12 months of the year through education, research funding, and advocacy. Although a month of awareness won't resolve the issue completely, it is a good opportunity for us to work together toward improving the lives of people with PV, ET, and MF. Here are a few activities you can share with friends and family during September to spread awareness about MPNs:
- Attend one of the several in-person events happening Click here to check our calendar
- Explore our online resources to find needed information Click here
- Participate in a live webinar on how you can advance MPN research Click here
- Change your profile picture on social media to create a daily reminder during September of the cause you stand for Click here
- Become a charter member of (and spread the word about) a seminal research project that has the potential to CHANGE YOUR PROGNOSIS!
- Support research sponsored by the MPN Research Foundation Click here
We'll also send you weekly emails about these and other initiatives so that you can take action during September. There is no magic switch or quick fix we can offer you today but we at the MPN Research Foundation promise to be there for people with PV, ET and MF by supporting research until better treatment options and eventually a cure is found. If you want to find out more about our programs, stay tuned during September and feel free to reach out anytime at 312-683-7243 or firstname.lastname@example.org.
About the Blog
Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..